way Health Info C a n a d a

way Health Info C a n a d a
C a n a d a
Health Infoway
P a t h s
t o
B e t t e r
H e a l t h
F i n a l R eport
Advisory Council on Health Infostructure
The Honourable Allan Rock
Minister of Health
House of Commons
Ottawa, Ontario
K1A 0K9
Minister:
We, the members of the Advisory Council on Health Infostructure, are honoured to present to you
our final report, Canada Health Infoway: Paths to Better Health.
Over the course of our 18-month mandate, the Advisory Council met and worked with a number of
collaborators. This included the provinces and territories, other federal departments, various health
stakeholders, including health professionals and providers, policymakers, researchers and the general
public, to develop a shared vision for a health infostructure, and identify its basic shape and the
essential needs it should meet for Canadians. This report contains our conclusions, recommendations
and proposed action steps for the development of the Canada Health Infoway.
It is the Advisory Council‘s view that the Canada Health Infoway will become the key information
and communications foundation for our health care system in the 21st century. We also believe that
the Canada Health Infoway can, and will, result in improvements in the health of Canadians by
bringing to them better health information, thus enabling better decisions to be made about their
health and the health of others. The Canada Health Infoway will also improve the health of
Canadians by improving the efficiency and effectiveness of the health care system, and lead to
increased accountability and responsiveness to Canadians‘ health needs.
As information and communications initiatives in the health sector continue to advance in all
jurisdictions, we feel it is imperative that action be taken as quickly as possible. This must ensure
that progress continues in an environment characterized by multi-sector collaboration, and, that there
is recognition of common objectives for the health system to modernize and meet Canadians‘ evolving
health needs. Steps that can be taken in the short term are detailed in our report.
Our mandate has given us the opportunity to study a number of issues central to preserving a health
system that Canadians rely upon and still consider the best in the world. Efforts toward developing
the Canada Health Infoway will serve to further strengthen the system and benefit Canadians now,
and in the future.
Respectfully submitted,
Members of the Advisory Council on Health Infostructure
C a n a d a
Health Infoway
P a t h s
t o
B e t t e r
H e a l t h
F i n a l R eport
A d v i s o r y C o u n c i l o n
H e a l t h I n f o s t r u c t u re
February 1999
This final report was prepared by the Advisory Council on Health Infostructure.
Additional copies are available from:
Health Canada Publications
Postal Locator 0913A
Brooke Claxton Building
Ottawa ON
K1A 0K9
Telephone: (613) 954-5995
Fax: (613) 941-5366
This report can also be downloaded from the Website address:
http://www.hc-sc.gc.ca/ohih-bsi
Questions and comments should be sent by mail to:
Office of Health and the Information Highway - Health Canada
Information, Analysis & Connectivity Branch
11 Holland Avenue, Tower A, 2nd Floor
Postal Locator 3002A2
Ottawa ON
K1A 0K9
Fax: 613-952-3226
E-mail: [email protected]
This publication can be made available on computer diskette, in large print, on audio-cassette or in braille upon
request.
The opinions expressed in this publication are those of the Advisory Council on Health Infostructure and do
not necessarily reflect the official views of Health Canada.
© Minister of Public Works and Government Services, 1999
Ce rapport est également publié en français sous le titre Inforoute Santé au Canada : Voies vers une meilleure santé.
Cat.: H21-145/1999E
ISBN: 0-662-27489-X
Table of Contents
Acknowledgements
1
Executive Summary
3
Our Health Depends on It
3
Values, Vision, Strategy and the Need for Cooperation
5
Empowering the General Public
7
Strengthening and Integrating Health Care Services
9
Creating Strategic Information Resources
10
Improving Privacy Protection
11
The Need for Harmonized Standards
12
An Aboriginal Health Infostructure
12
Technology Transfer and Public-Private Sector Collaboration
13
A Strategic Investment
14
Preface
15
Mandate
15
Process and Consultations
15
Next Steps
16
1. Toward a Healthier Canada
1 -1
What Is the Canada Health Infoway?
1 -1
Values and Vision
1 -2
Strategic Framework
1 -4
Cooperation – The Critical Success Factor
1 -5
Key to Report
1 -6
2. Empowering the Public
2 -1
Means of Empowerment
2 -1
Health Information for the General Public
2 -2
Ensuring Access
2 -8
Public Input and Accountability – Promoting Citizen Engagement
2 -12
3. Strengthening and Integrating Health Care Services
3 -1
Health Care and the Canada Health Infoway
3 -1
Supporting the Health Care Team
3 -3
Electronic Health Records
3 -5
Seizing the Telehealth Opportunity
3 -11
4. Creating Information Resources
4 -1
The Need for Strategic Information Resources
4 -1
Problems with Existing Information
4 -2
Key Questions – Key Answers
4 -4
Privacy Protection as a Design Feature
4 -5
The Health Information Roadmap – An Action Plan for the 21st Century
4 -5
Report Cards on the Health Care System
4 -7
Need for a National Health Surveillance Network
4 -8
5. Improving Privacy Protection
5 -1
Privacy Concepts
5 -2
Key Legislative Mechanisms
5 -2
6. Standards
6 -1
Standards and Privacy
6 -1
Developing and Implementing Compatible Standards
6 -2
Testing for Compatibility
6 -3
7. An Aboriginal Health Infostructure
7 -1
A Unique Approach to Health Information
7 -1
Steps Toward an Aboriginal Health Infostructure
7 -3
8. Technology Transfer and Public-Private Sector Collaboration
8 -1
Technology Transfer
8 -1
Public-Private Sector Collaboration
8 -3
9. A Strategic Investment
9 -1
An Infrastructure for the 21st Century
9 -1
From Promise to Reality
9 -2
10. Moving Forward
10 -1
Glossary
G -1
Annex A: Members of the Advisory Council on Health Infostructure
A -1
Annex B: List of Recommendations
B -1
Recommendations from Final Report
B -1
Recommendations from Interim Report
B -9
Acknowledgements
T
he Advisory Council on Health Infostructure
wishes to give special thanks to Allan Rock,
Minister of Health, who throughout our mandate
has been enormously supportive in first providing the initial vision and mandate to the
Council. He also encouraged us to explore the
opportunities for marrying Canadian strengths
and values in health care with the Canadian
genius for developing and using information
and communications technologies. The Council
expresses gratitude to all those who took the
time to share with us their ideas relating to a
health infostructure for Canada. We are also
grateful to all those individuals and organizations
who prepared specific papers within extremely
short deadlines to inform our discussions. As
noted earlier, the Council especially appreciated
the input from individual Canadians to our
interim report. We also acknowledge the dedication, hard work and expert assistance from our
Secretariat and other staff from the Office of
Health and the Information Highway at Health
Canada. Pierrôt Péladeau of the Centre for
Bioethics at the Clinical Research Institute of
Montreal provided us with invaluable advice on
an ongoing basis throughout our mandate.
Finally, the Advisory Council offers its sincere
thanks to John Sifton, the writer for both our
interim and final reports, who worked under
tight time constraints to put our collective
thoughts on to paper.
Canada Health Infoway
Paths to Better Health
1
Executive Summary
C
anadians see the publicly administered
health care system as a defining feature of
their identity. It is Canada’s number one social
program. Their support for it unites them across
provincial, territorial, cultural, linguistic and
socio-economic boundaries. For as long as many
Canadians can remember, they have believed
that it will be there for them if they fall ill or
have an accident. That confidence has contributed greatly to the Canadian quality and
way of life for almost 40 years.
But now and in ever-increasing numbers,
Canadians are starting to worry that the system
will not be there when they need it – and may
not be there now. They worry about the ability
of the system to provide universal access to
comprehensive care when and where they need
it. They worry that the major changes taking
place in the health care system – regionalization,
hospital restructuring, shifts toward communitybased care – may be degrading the quality of
care. Beyond the short-term anxieties, Canadians
want to be assured that the health system will
be up to their needs in the 21st century. All too
often they feel too isolated and uninformed to be
able to turn this concern into constructive action.
This report is about how new information and
communications technologies strategically
deployed in a pan-Canadian health information
highway (Canada Health Infoway, for short) or
infostructure, can help to empower Canadians
with better health information and new opportunities. This report is also about how the
Canada Health Infoway can help significantly to
improve the quality, accessibility, portability and
efficiency of health services across the entire
spectrum of care. It is also about how the
Infoway can enable the creation, analysis and
dissemination of the best possible evidence from
across Canada and around the world as a basis for
informed decisions by patients, citizens, informal
caregivers, health professionals and providers, and
health managers and policymakers.
In the Council’s view, the Canada Health
Infoway will become the key information and
communications foundation for our health care
system in the 21st century. It will also become a
powerful contributor to improvements in the
health of Canadians.
What is the Canada Health Infoway or health
infostructure? The term refers not just to the use
of information and communications technologies
in health. It also refers to the health information
the technologies create, the policies governing
use of this information, and the people and
organizations who create the information and
use this infrastructure.
The Canada Health Infoway will also not be a
single massive structure. It will be built upon
the foundation provided by provincial, territorial
and federal health infostructure initiatives
already being designed or implemented. Each
will retain its identity and integrity. It is the
vision of the Canada Health Infoway which
allows these diverse initiatives to complement
each other in improving the health of all
Canadians.
Our Health Depends on It
Our health affects everything we do. Nothing is
more basic to our existence. When we think
about it, we usually think of lifestyle choices
and access to quality care. To a lesser extent, we
may think about the provision of services to
protect our health. What we often forget is the
large degree to which both of these depend on
good information and effective communications
which a health infostructure or Health Infoway
can deliver. Some of the main benefits that will
be realized will be described below.
Because of health reform and restructuring,
Canadians are increasingly anxious that the
health care system will not be there when they
need it. But they lack consistent access to reliable
information on where to go for the best treatment,
how well health care programs and services
serve patients, or on the overall performance of
the health care system. The Canada Health
Infoway will provide Canadians with report
cards on health care programs and services,
and solid information on the health care
system as a basis for consumer choice, assessing
the health of their communities, holding the
system accountable and providing input into
health policy.
Canada Health Infoway
Paths to Better Health
3
Patients and informal caregivers want more
information on where to go for help, on the
treatment options available to them, and on
strategies to protect their health. And many
Canadians want to be more informed about
whether their lifestyle or nutritional choices are
truly healthy. However, while ever more health
information is becoming available through the
media and the Internet, it is hard to distinguish
reliable information from that developed to
promote a product or crank remedy. The Canada
Health Infoway will allow the development and
dissemination to Canadians of evidence-based
information on treatment options, healthy
lifestyles and emerging health concerns in many
different ways. This will give people new means
of obtaining insight and support when making
personal health care decisions.
During an emergency in the middle of the night
or when travelling to another province, it is
often impossible for patients to ensure that the
health care professional or provider on the scene
has access to their health history. The Canada
Health Infoway will let patients provide access
to critical information in their health records
24 hours a day, seven days a week, with fuller
assurances of confidentiality than can be provided
today with a paper-based system.
Most of the first-time patients visiting doctors’
offices, community clinics and hospital outpatient
clinics or emergency wards bring with them little
or no medical history, only their own subjective
impressions. This situation adds a potentially
dangerous haphazardness to diagnostic and
treatment decisions. Even if the patient brings a
record from a physician or health care professional, it is incomplete and unhelpful in all too
many cases. The Canada Health Infoway has the
potential to ensure that patients can allow
appropriate and timely access to their medical
histories by health care professionals and
providers, thereby ensuring that diagnoses
and treatment decisions are made with a full
knowledge of the patient’s background.
4
Canada Health Infoway
Because it is so difficult to gain access to past
information on patients, health care professionals
and providers often order potentially avoidable
tests and x-rays, adding to health care costs and
sometimes creating potential risks for patients.
The Canada Health Infoway will dramatically
reduce the chances that patients will be subjected
to expensive, potentially unnecessary, redundant
and sometimes risky tests and x-rays.
Health reform and restructuring have created a
much more complex health care system in which
it is increasingly difficult to prevent patients
from slipping between the cracks. Coordination
and keeping track of patients is a challenge for
newly merged hospitals and medical facilities
with campuses in several locations. Only the
most basic data are often available on public
health, home care services, and community
health and long-term care institutions which
have emerged during the last decade and a half.
The Canada Health Infoway will provide the
information and communications infrastructure
that will allow the seamless delivery of patient
care across the wide range of diverse institutions
composing today’s complex health system.
Because the amount of specialized information
for health professionals is growing exponentially
around the world, it has been estimated that
practitioners would have to read 19 articles a
day, 365 days a year, to keep up-to-date. Instead
of being able to sift through everything to find
the best information, they may have to search
for information from more accessible local
sources or may find that available information is
irrelevant. The Canada Health Infoway has the
potential to provide health care professionals
and providers with convenient electronic access
to the right up-to-date information at the right
time from around the world through clinical
decision support systems and new learning
tools which will allow them to upgrade their
knowledge and maintain competency.
Paths to Better Health
For people in remote or rural areas or requiring
very specialized forms of treatment, costly travel
to metropolitan areas where the necessary
expertise exists is often the only option for
securing a needed treatment or diagnosis.
Meanwhile, because of isolation and the difficulties of being the only professional or provider
for a remote and widely scattered population, it
is increasingly hard to keep doctors and nurses
in rural and remote areas. The Canada Health
Infoway can provide the communications facilities
to bring needed medical expertise to remote and
rural areas, to support and upgrade professionals
and providers in those areas, and to provide
Canadian patients with access to the best
expertise in the world.
In the 1980s and 1990s, health managers have
faced many difficult decisions on everything
from how to cut budgets to how to restructure
their institutions without compromising patient
care. While mountains of information exist and
everyone has a strong opinion, very little solid
empirical information is available to help managers make the best decisions. The Canada
Health Infoway will provide health managers
with much needed empirical information on the
health impacts, as well as the financial and
administrative implications, of their decisions.
In the name of health reform, policymakers
have made many difficult decisions over the last
15 years on everything from reductions in the
number of hospital beds to levels of coverage
for the costs of prescription drugs. Although
much information is available on these issues,
there is a shortage of hard, empirical information
on health effects. In many cases, the means of
gathering information to evaluate the health
and cost implications of decisions already made
simply do not exist. The Canada Health Infoway
will provide health policymakers with critical
evidence and feedback for evaluating the effects
of past decisions and projecting alternative
scenarios to illuminate the implications of
future decisions.
Although our understanding of medicine and
health is growing by leaps and bounds, it is
often impossible to find information relevant to
a particular environmental hazard or a specific
patient with a specific ethnic background,
lifestyle and socio-economic status – to mention
only a few of the variables relevant to an understanding of non-medical determinants of health.
Nor do we systematically exploit the vast
amounts of data we already have on the outcomes
of medical interventions. The Canada Health
Infoway should allow researchers to reach new
and fundamental understandings of health
determinants, both medical and non-medical,
with possibly far-reaching implications for our
own health as well as the quality and cost of
health care.
Each federal, provincial and territorial jurisdiction
now takes a different approach to privacy, with
the result that the level of protection varies
greatly across the country. At the same time, the
level of security in hospital record offices and in
physicians’ offices can leave much to be desired.
Most people do not know how to gain access to
their records, while the rules governing how
much of a person’s file a health care professional
or provider needs to see are often vague. A key
foundation of the Canada Health Infoway will
be the harmonization upward of provincial,
territorial and federal privacy legislation for
privacy protection in the health sector. Another
will be the implementation of fair information
practices and privacy-enhancing technologies
throughout the health sector. In addition to giving
people greater control over their health records,
these will involve strict and explicit controls on
access to such records, including making them
available to health care professionals and
providers only on a “need-to-know” basis.
Values, Vision, Strategy and
the Need for Cooperation
European countries, Japan and the United States
are all investing heavily in information and
communications technology applications for the
health sector. In September 1998, the British
government released an ambitious and farranging strategic plan to spend more than
£1 billion over seven years on such an initiative.
Canada’s expenditures on information technology
in the health field are expected to rise from less
than $1 billion a year in 1996 to more than
$1.5 billion by the year 2000.
Canada Health Infoway
Paths to Better Health
5
Much of this money is now being used to build
health infostructures at the provincial, territorial
and regional levels. These, in addition to key
federal initiatives such as the Canadian Health
Network, the National Health Surveillance
Network and the First Nations Health Information
System, represent essential building blocks for
the Canada Health Infoway. But right now there
is no collective vision or overall pan-Canadian
strategy to guide how this money is being spent.
As a Council, we believe the
values for this vision should be
“First and foremost, the Canada
the same ones that underpin
Health Infoway should strengthen Canadians’ support for our
health care system. First and
Medicare as a single-payer, publicly foremost, the Canada Health
funded health care system guided Infoway should strengthen
Medicare as a single-payer,
by the five principles of the
publicly funded health care
system guided by the five
Canada Health Act....”
principles of the Canada
Health Act – universality,
accessibility, comprehensiveness, portability and
public administration – within the framework of
a strong federal, provincial and territorial partnership. The values of fairness and compassion
underlie these principles and will help shape
the evolution of the Canada Health Infoway.
Privacy must also be a key value in the Canada
Health Infoway. We believe that the level of
privacy protection on the Canada Health
Infoway has the potential to be higher than in
today’s paper-based world.
Chapter 1 discusses other values which will be
central to the development of the Canada Health
Infoway. It is the marriage of these values with
a sense of new technological capability that
provides the foundation for our vision of the
Canada Health Infoway. That vision is as follows:
The Canada Health Infoway empowers individuals
and communities to make informed choices about
their own health, the health of others and Canada’s
health system. In an environment of strengthened
privacy protection, it builds on federal, provincial
and territorial infostructures to improve the
quality and accessibility of health care and to
enable integrated health services delivery. It
provides the information and services that are
the foundation for accountability, continuous
improvement to health care and better
understanding of the determinants of
Canadians’ health.
6
Canada Health Infoway
This vision is very people-focused. The individuals whom the Canada Health Infoway should
empower include individual Canadians, in their
roles as patients, informal caregivers, citizens or
consumers of health information; physicians,
health care professionals and providers; and
health researchers, managers and policymakers.
The communities to be served by the Canada
Health Infoway range from local communities to
Aboriginal communities to organizations to geographically dispersed communities of interest
defined by a particular health concern or issue.
The realities of the Canadian health system at
the millennium have shaped our strategy for the
Canada Health Infoway. It flows from a recognition that people are concerned about the health
system, want to take more responsibility for
their own health, and are demanding greater
accountability from the system. It stems from a
realization that lack of coordination across the
spectrum of health care services is a major
source of inefficiency and public anxiety. It is
based on the perception that health care professionals and providers need to keep abreast of
the global explosion in health knowledge. Its
foundation is a respect for provincial and territorial jurisdiction in health care delivery and a
recognition that provincial and territorial health
information systems represent the building
blocks for the Canada Health Infoway.
For the core of this strategic framework, the
Council has stated four strategic goals for the
Canada Health Infoway:
• empowering the general public;
• strengthening and integrating health care
services;
• creating the information resources for
accountability and continuous feedback on
factors affecting the health of Canadians;
and
• improving privacy protection within the
health sector.
Paths to Better Health
Until now, health infostructure developments
across Canada have occurred without sufficient
consideration of how they will ultimately fit
together into a Canadian system. The federal
government will be critical to the success of the
Council’s strategy by acting on its responsibility
to foster mutual cooperation and collaboration
among provincial and territorial governments,
Aboriginal communities, and all stakeholders in
developing and implementing the Canada Health
Infoway. Whatever the outcome of ongoing
discussions about a new “social union” in
Canada, partnership among all levels of government will be crucial to fulfilling the potential of
the Canada Health Infoway. Only a pan-Canadian
health infostructure will fully capture the
benefits – in terms of health care portability and
large population research on interventions and
determinants of health – implicit in the capabilities
of the new information and communications
technology.
Empowering
the General Public
The Canada Health Infoway should empower
members of the public to make informed choices
about their own health, their health care and
about health policy.
For this to occur, three conditions must be met.
• First, the Canada Health Infoway must provide Canadians with credible information
that will be useful to them as citizens, as
patients, as informal caregivers or simply as
laypersons interested in making healthy
choices about nutrition or lifestyles.
• Second, people should actually have
equitable and affordable access to the
infostructure and to the information it
makes available.
• Third, the infostructure should allow
opportunities for communities to become
involved in holding the health system
accountable and provide input into
health policy.
Health Information
for the General Public
In the Council’s view, federal, provincial and
territorial health ministries must recognize in
their funding decisions that health information
is an essential public good which should be
readily available and accessible to all Canadians
as a component of Canada’s publicly funded
health system. This information should include
whatever might help Canadians facing decisions
about their own health or trying to hold the
system accountable.
Because of the general public’s diversity, these
health information needs are not fully understood
and deserve further investigation using a variety
of culturally appropriate, interactive and ongoing
strategies. Many members of the public also do
not know how to use information technology.
To promote further their ability to access and use
empirically based health information, the federal
government should support demonstration
projects of applications for
this purpose. As well, Health
“... health information is an
Canada should establish a
fund to support efforts by
essential public good which
consumer and health intermediaries to provide the public
should be readily available and
with access to consumer
accessible to all Canadians as a
health information. These
non-profit intermediary
component of Canada’s publicly
organizations now meet
funded health system.”
many of the public’s health
information needs.
To help the public distinguish objective, empirically based health information from promotional
data, Health Canada, in partnership with
provincial and territorial health ministries,
should take the lead in ensuring the development
and implementation of standards for such information. These should eventually evolve into
rating criteria for websites providing health
information. It will also be important to ensure
that health concerns – such as consumer
protection with respect to health products and
services – are adequately reflected in the present
work of governments in developing legislative
and regulatory frameworks for electronic
commerce on the Internet.
Canada Health Infoway
Paths to Better Health
7
In health as in other areas, there is now far more
information on the Internet in English than in
French. For this reason, Health Canada should
work with other federal departments and agencies
and specialists in the field to encourage development of an Internet search capability which is
specific to health and, at a minimum, fully and
equally meets the needs of Canada’s Englishand French-speaking communities.
The policies and practices now in place to recover
costs or generate revenues from making publicly
funded government information available are
another of the obstacles to obtaining free health
information. Health Canada and representatives
of user communities should take the lead in
encouraging the federal government to review
these policies and practices.
Ensuring Access
It is paramount that there be universal, affordable,
equitable access throughout Canadian society to
the Canada Health Infoway. To this end, the federal
government should continue
to ensure universal, equitable
“It is paramount that there be
and affordable access to basic
telecommunications infrastrucuniversal, affordable, equitable
ture, now and in the future.
Health Canada should also
access throughout Canadian
take a leadership role in
society to the Canada Health
ensuring that health
information and health care
Infoway.”
applications for the public are
developed to be accessible to
all citizens, irrespective of their geographic
location, income, language, disability, gender,
age, cultural background or level of traditional
or digital literacy.
Not all Canadians will be in a position to access
health information over the Internet. Thus,
investments in the digital networking of the
Canada Health Infoway should be balanced by
appropriate investments in the other (i.e. nonelectronic) ways for sharing information that
can lead to improved health.
8
Canada Health Infoway
A real need exists to establish on the Internet a
“Canada Health Space,” a universally accessible
health information/communications commons
governed by Canadians in the public interest. In
such a Canada Health Space, every individual
or organization with products or activities
affecting health would report on their health
implications. The Canada Health Space would
be operated by health intermediaries – libraries,
community health information centres, clinics,
health promotion organizations, etc. – which
represent major sources of health information
for many members of the public.
The nation-wide networking of these organizations will create a new opportunity to distribute
health information. This networking deserves
support from Health Canada, in partnership
with other federal departments, provinces and
territories, and health stakeholders. This assistance
should take the form of funding and technical
support, and should be budgeted for as a normal
cost of doing business electronically. A concerted
effort should also be made to ensure that all
public and not-for-profit health care institutions
in Canada are aware of Industry Canada’s
Community Access Program, and how they can
apply for resources to locate public electronic
access facilities on or near their premises.
As a means of ensuring more equitable access to
health information and health care services,
Health Canada, in partnership with provincial
and territorial health ministries, should work
closely with the Canadian Network for the
Advancement of Research, Industry and
Education (CANARIE), and Industry Canada
to investigate the further integration of new
technologies, including satellite technologies,
into health networks at all levels.
Public Input and Accountability
The Internet is now connecting communities of
like interest – independent of distance and at
very low cost – by allowing people to exchange
information electronically, develop common
positions and take collective action on issues at
every level. However, the groups representing
the public are voluntary organizations wholly
dependent on volunteers’ time, energy and
financial resources. The public is also diverse.
People with disabilities, seniors, women – to
mention only a few – will each have a unique
view on the shaping of health policy, the Canada
Health Infoway and the information it carries.
Paths to Better Health
The Council believes there is a serious need for
Health Canada to establish an independent office
of citizen health advocacy to coordinate and
facilitate input and participation by these diverse
publics into health policy deliberations, specifically policies relating to the Canada Health
Infoway. A key role of this office would be to
ensure that assessments and evaluations of
health sector activities relating to the general
public are produced, and that they are available
and accessible to the general public. This would
involve setting the agenda for, and demanding
action on, report cards addressing the performance of health care programs and services,
outcomes from interventions and treatments,
and the actual health impact of health and other
public policies.
Strengthening and
Integrating Health Care
Services
In addition to strengthening health care by
encouraging a more informed and involved
public, the Canada Health Infoway will directly
contribute to significant improvements in
health care services. It will provide health care
professionals and providers with the communications and information tools and supporting
environment they need to improve the quality,
accessibility, portability and efficiency of health
care services.
Supporting the Health Care Team
Central to health care are the health care professionals and providers who actually deliver care.
Without their active support and use of the new
tools offered by the Canada Health Infoway or
its provincial and territorial components, little
will change and evidence-based decision making
will remain more a promise than a reality.
Federal, provincial and territorial governments
should develop and test incentives to encourage
and assist health care professionals and providers
to adopt health infostructure applications.
Governments, in collaboration with associations
of health care professionals, should also fund
training to help these groups acquire the necessary
digital skills, as well as to participate in developing, piloting and evaluating tools to support
clinical decision making. In the Council’s view,
it would also be prudent to
put in place a labour force
strategy to address the
impact of these changes
upon health care professionals, providers and workers,
and to make sure that the
necessary skills and knowledge are in place.
“The Council believes there is a
serious need for Health Canada to
establish an independent office of
citizen health advocacy....”
Electronic Health Records
Patient-based health records are fundamental to
provincial and territorial health infostructures.
However, they have the potential for serious
violations of privacy. The Council believes that,
with particular care, electronic health records
can actually enhance privacy protection,
improve patient care, enable telehealth, empower
citizens through greater control of their own
health records and serve as the foundation for
an ever-improving information and evidencebased health system.
The federal Minister of Health
should work with his provincial and territorial counterparts
to improve patient care
through the creation of
provincial and territorial
person-based, electronic
health record systems.
These systems would make
accessible – on a need-to-know
basis and under the control
of patients – all relevant
information about their past
medical histories.
“Central to health care are the
health care professionals and
providers who actually deliver
care. Without their active support
and use of the new tools offered by
the Canada Health Infoway...little
will change and evidence-based
decision making will remain more
a promise than a reality.”
As one means of protecting patients’ privacy,
Ministers should ensure that legislative safeguards
are in place against the use of personal identifiers
in health for purposes outside the health field.
Also critical will be measures
to improve the security of
health records by taking
“The Council believes that, with
advantage of modern technologies such as encryption,
particular care, electronic health
authentication and the elecrecords can actually enhance
tronic logging of all accesses
made to a personal record.
privacy protection, improve
Canada Health Infoway
patient care, enable telehealth,
empower citizens....”
Paths to Better Health
9
In the Council’s view, federal, provincial and
territorial governments should work together to
ensure a transparent and harmonized approach
across the country – in light of the principles in
the report – to conduct ethical reviews on a
case-by-case basis of proposed health research
projects that require access to individually
identifiable records and that cannot be done on
the basis of informed consent of patients. Such
ethical reviews would assess whether there is
sufficient public good expected as a result of a
proposed project to warrant the project and
the possible invasion of privacy. To this end,
governments should consider establishing an
independent oversight mechanism to ensure
that ethical review panels across the country
operate in a manner consistent with the principles
in the report; and/or creating, if necessary in their
respective jurisdictions, ethical review panels
which would operate in accordance with
those principles.
The evolving provincial and
“Telehealth can help link the diverse territorial health information
systems should also have a
services in today’s complex health system architecture that
makes it possible to exchange
system into an integrated whole....”
information under the strictly
controlled circumstances as
presented in this report. Finally, provincial and
territorial privacy legislation should be harmonized to facilitate these objectives.
Seizing the Telehealth Opportunity
Telehealth can help link the diverse services in
today’s complex health system into an integrated whole and ensure that they operate in a fully
coordinated fashion. Telehealth applications can
also enable the health care system to deliver better
quality services electronically to previously
underserviced rural and remote areas and help
local health care professionals and providers to
deliver better care.
“Information, wisely and strategically used and made available in a
way fully respecting individual
privacy, will be a basic foundation
of the Canada Health Infoway.”
10
Federal, provincial and territorial Ministers of Health
should establish a telehealth
task force to develop a
Canadian strategy for integrating telehealth into health care
delivery. To create a knowledge
base for the task force, funding should be made available
to develop broadly accepted
Canada Health Infoway
frameworks for assessing the value of telehealth
applications, undertaking telehealth pilot and
demonstration projects, assisting national
telehealth organizations, supporting telehealth
training for health care professionals and
providers, and assisting research on the
ethical, legal and social issues associated with
telehealth.
Providing telehealth services across jurisdictional
boundaries can raise complex issues because of
differences among jurisdictions in legislation,
regulations and professional requirements
governing delivery of health care. For example,
when services are provided across jurisdictional
boundaries, how will health care professionals
and providers be reimbursed? If something goes
wrong, who will be accountable? Several professional associations are examining these issues,
and the Council calls for further measures to
build on these efforts.
Creating Strategic
Information Resources
Information, wisely and strategically used and
made available in a way fully respecting individual privacy, will be a basic foundation of the
Canada Health Infoway. Such information can
go a long way toward ensuring that Canada’s
health system continues to improve and becomes
more accountable to Canadians. Serious gaps
and flaws exist in the information now available.
These must be filled if the full benefits of the
Canada Health Infoway are to be realized.
In the Council’s view, the report, Health
Information Roadmap: Responding to Needs,
developed by the Canadian Institute for Health
Information (CIHI), Statistics Canada and
Health Canada, fully lays out a plan to create
information resources to support accountability
and continuous feedback on factors affecting the
health of Canadians. In the context of the stringent
privacy safeguards, confidentiality requirements
and data security arrangements described in
Chapters 3 and 5, this plan provides for:
• the integration of standardized data to
allow comparisons and new insights;
• expanded or new data coverage for health
services, medical interventions, health
determinants and the costs of services;
Paths to Better Health
• data exchange and connectivity; and
• increased analytic expertise and the
dissemination of results.
The federal Minister of Health should commit
the necessary levels of funding (as detailed in
the report) to ensure successful implementation
of the plan.
The plan includes report cards to the public to
improve the overall accountability of the health
care system. Such report cards would be based
on evaluative analyses and consensus building
to develop yardsticks and fair measures of
health care system performance and Canadians’
health status.
As well, federal, provincial and territorial
Ministers of Health should collaborate in supporting the development of a National Health
Surveillance Network that will enable timely
monitoring of the health of a region, province,
territory or the nation as a whole in a global
context.
Improving Privacy
Protection
Significant variations now exist in provincial and
territorial laws, regulations and guidelines for
privacy and the protection of personal health
information. This diversity could seriously hamper
development of the Canada Health Infoway. In
its interim report, the Council called on the federal
Minister of Health to take the lead in encouraging
an accord among provincial, territorial and federal
governments to harmonize – taking into account
best practices internationally – the approaches
in their respective jurisdictions to privacy and
the protection of personal health information.
The legislation should incorporate a definition
of a custodian or trustee of personal health
information, and a custodian or trustee’s obligations. It should ensure that these obligations
apply equally to private sector organizations
and organizations acting as an agent or contractor
for the custodian. As well, it should define a
guardian (e.g. for a minor child or a mentally
incompetent person) and a guardian’s obligations.
The legislation should define what constitutes
informed consent, as well as provide a clear
statement of principle to the effect that informed
consent should be the basis for sharing information. It should define “exemptions” to this
requirement for informed consent and give clear
guidance on how to balance the right of privacy
with the public good for research purposes.
Such legislation should prohibit all secondary
commercial use of personal health information
and set clear limits on access and use of health
information by third parties outside the health
care system. It should contain provisions regulating secondary uses of
non-identifiable health infor“...legislation should prohibit all
mation, taking into account
the range of potential
secondary commercial use of
identifiability of such information. Finally, it should
personal health information...set
prohibit the use of personal
clear limits on access and use
identifiers in health for other
purposes.
of health information by third
In harmonizing, governments should ensure
that their privacy legislation for health embodies
a clear definition of health information, broad
enough to incorporate health information
collected in public and private systems. Such
legislation should ensure that equal obligations
and penalties apply to both public and private
sectors. It should also include a definition of
personal health information which takes into
account the spectrum of potential identifiability.
Canada Health Infoway
parties outside the health care
system...contain provisions
regulating secondary uses of
non-identifiable health
information...prohibit the use
of personal identifiers in health
for other purposes.”
Paths to Better Health
11
The Need for Harmonized
Standards
The Canada Health Infoway will not be only one
massive structure. It will be composed of
provincial and territorial as well as federal
health infostructures and those of regional
health authorities. Each of these will retain its
identity and integrity.
The Canada Health Infoway will have the
potential for two kinds of information transfers
among provincial and territorial health infostructures.
• First, the Infoway should allow for the
possibility of transfer of a patient’s health
record for the purpose of treating that
patient and subject to his or her control.
• Second, the Infoway should allow the
precisely controlled pooling of information
from provincial and territorial health
records for research purposes, under the
conditions in Recommendation 3.4 and legislative provisions in Recommendation 5.1.
For such controlled interconnections to be possible, it will
“Despite significant progress,
be necessary to achieve a
significant level of harmonizaCanada has a long way to go in
tion among the standards used
developing compatible standards.” in provincial and territorial
health information systems.
Despite significant progress, Canada has a long
way to go in developing compatible standards.
The Council in its interim report recommended
that Canada should develop a strong Canadian
capability for cooperatively managing the
development and adoption of compatible
standards in the areas of health information and
telematics, with strong links to international
standards deliberations.
12
Canada Health Infoway
Such a strong Canadian capability can be achieved
only if CIHI receives sufficient funding for standards development from federal, provincial and
territorial governments. Its partnership initiative
should be expanded to allow greater participation
by citizens. Because health care is largely publicly
funded and administered, it is critical that CIHI
have a formal process for identifying, ratifying
and implementing standards in conjunction
with federal, provincial and territorial Deputy
Ministers of Health. CIHI should also continue
to play a lead role in Canada with respect to
international standards deliberations in the area
of health informatics and telematics. Finally,
Industry Canada and the Standards Council of
Canada should establish a standards development
organization for health informatics and telematics
based on a partnership between CIHI and the
Canadian Standards Association, drawing on
the strengths of both organizations.
The Council believes it is only prudent for Health
Canada to work with CANARIE and other organizations to ensure that facilities are available to
test the compatibility between new and existing
products before actual use on networks forming
the Canada Health Infoway. Because many
compatibility issues can be resolved only in
practice, Health Canada should also offer incentives for provincial and territorial governments
to work jointly on projects to refine and resolve
such issues.
An Aboriginal Health
Infostructure
Health Canada has a long-standing responsibility
for providing health care services to First Nations
and Inuit communities. The Council thus commissioned two papers by the Assembly of First
Nations (AFN) to explore Aboriginal health
information needs and the potential of an
Aboriginal Health Infostructure. The recommendations made in those papers provide a strong
foundation for advancing the health infostructure in Aboriginal communities and should
be used in consultations with representatives of
all Aboriginal communities.
Paths to Better Health
Because of the uniqueness of the situation and
health information needs of Aboriginal communities, Health Canada should consider an
Aboriginal Health Infostructure, strategically
interconnected to the Canada Health Infoway,
as an autonomous and distinct institutional
development consistent with Aboriginal interests.
Aboriginal groups should also receive financial
resources to undertake further consultation and
communications with governments, private sector
groups and each other, as a means of confirming
and further developing the concept of the
Aboriginal Health Infostructure and defining
plans for its development and implementation.
Resources committed and dedicated for capacity
development and training should be specifically
designated for Aboriginal people to support the
Aboriginal Health Infostructure and Aboriginal
participation within the Canada Health Infoway.
An important health information resource for
Aboriginal people will be the First Nation and
Inuit Regional Longitudinal Survey. Health
Canada, in partnership with other federal
departments, should support and fund this survey
to enable a sustained, ongoing, comparable
source of First Nation and Inuit population
health information, data collection, research and
analysis capacity within a process validated and
supported by the First Nations and Inuit peoples,
both regionally and nationally. Health Canada
should also provide additional resources for the
First Nations Health Information System, but
only on a sustainable basis and in the context of
developing a comprehensive Aboriginal Health
Infostructure. The Aboriginal Health Infostructure
will consist of a multifaceted, interlinked process
involving many initiatives – some currently
under way and others to be developed.
Most remote and rural Aboriginal communities
lack the communications infrastructure to support
reliable high-speed transmission or reception of
data, images or text. Health Canada should take
the lead, with other federal departments, to ensure
that the state of the communication infrastructure
in Aboriginal communities is assessed. This
investigation should be conducted with a view
to undertaking technical
enhancements to support
high-speed data transmission
and enable accessible, affordable and reliable use of the
Canada Health Infoway with
service levels comparable to
those in similar non-Aboriginal
communities. Development
and implementation of the
health infostructure in
Aboriginal communities
should also involve a sustained
commitment to developing an
economic infrastructure in
those communities.
“Because of the uniqueness of the
situation and health information
needs of Aboriginal communities,
Health Canada should consider an
Aboriginal Health Infostructure,
strategically interconnected to the
Canada Health Infoway, as an
autonomous and distinct institutional development consistent
with Aboriginal interests.”
Technology Transfer and
Public-Private Sector
Collaboration
The ongoing revolution in information and
communications technology remains one of the
driving forces behind development of the
Canada Health Infoway. The pace of change
continues to grow. In five years, the technological
landscape may look very different. New health
care applications in the areas, for example, of
tele-homecare or telehealth will likely have farreaching implications and provide the basis for
new kinds of services to patients and the public.
If Canada’s health care system is to benefit fully
from these technological developments, health
care professionals, providers and institutions
must be involved in monitoring and adapting
information and communication technology to
health needs. Health Canada should take the
lead in developing, in cooperation with other
federal departments, provincial and territorial
ministries and professional and institutional
associations, a process to involve providers and
institutions in such monitoring. This process
should also help them take advantage of information on best practices and evaluations relating
to the deployment of these technologies in
health. Incentives and other means should be
used to promote ongoing innovation in the use
of this technology to deliver health information
and health care services. Finally, it will be critical
to address the human and behavioural impacts
of adopting information and communications
technology in health.
Canada Health Infoway
Paths to Better Health
13
Collaboration between the public and private
sectors can be an effective way of ensuring the
development or adoption of technology within the
health field. In this context, we mean technology
such as hardware, software, systems design,
system architectures, etc. We do not mean data
or service delivery, which can raise sensitive
issues, including the possibility of some eventual
privatization.
The Council believes that government has the
responsibility to define clearly its approach to
public-private collaboration and transparently
examine its implications in light of the following
principles. All such collaborations must pay
fastidious attention to safeguarding privacy and
protecting health information. They should also
respect and reinforce the principles of the
Canada Health Act, particularly public administration of the health system. As part of the normal contracting process where intellectual
property with a potential for commercialization
is likely to be developed, the return to the parties
should be in line with the contributions made
and the risks assumed by the parties. To the
extent possible, commercialization of intellectual
property should occur in Canada.
A Strategic Investment
Funding for the Canada Health Infoway is not
an investment where short-term payoffs provide
a sufficient rationale. The Canada Health Infoway
will be a strategic infrastructure that will transform and have impacts on the Canadian health
care system and the health of Canadians in the
long term. It is a positive revolution in the making.
Investments in health infostructure – and in its
essential building blocks at the provincial and
territorial levels – must take the long-term view.
Through such investments,
we will help to create the
“The Canada Health Infoway will Canadian health care system
of the 21st century – one in
be a strategic infrastructure that
which the public attains a new
level of empowerment, health
will transform and have impacts on
care services are stronger and
much more integrated, new
the Canadian health care system
information resources enhance
and the health of Canadians in
accountability and decision
making at all levels, and
the long term. It is a positive
privacy protection is signifirevolution in the making.”
cantly improved.
14
Canada Health Infoway
However, these long-term benefits are poorly
understood. In partnership with provincial and
territorial ministries of health, Health Canada
should therefore undertake public awareness
campaigns at the community level to emphasize
the importance of strategic health infostructure
investments.
To ensure that such benefits are fully realized, it
will be necessary to promote collaboration,
information sharing and mutual learning with
respect to the evaluation of health infostructure
initiatives and the benefits to be derived from
them. Similarly, it will be important to ensure
that all health infostructure projects and programs
demonstrate the relationship of their proposed
objectives and expenditures to the goal of
improving or maintaining the health of
Canadians. Finally, it will be vital to identify
and meet any national needs that remain
unaddressed by provincial and territorial health
infostructure initiatives.
In conversations with stakeholders across the
country, the Council has learned that without
new money the present set of ambitious provincial
and territorial health infostructure initiatives
will suffer and new ones will disappear at the
conceptual stage. For this reason, we believe
that, in transferring funding for health purposes
to provincial and territorial governments, the
Government of Canada should work with
provincial and territorial governments to ensure
that a portion goes to development of their
health infostructures, that they collaborate in
developing the Canada Health Infoway, and
that their own plans and priorities are set within
the context of a jointly developed Canadian
health infostructure.
Paths to Better Health
Preface
• advise on international developments in
this area and take them into account when
framing recommendations.
I
n the summer of 1997, the federal Minister of
Health established the Advisory Council on
Health Infostructure to give him strategic advice
on the development of a national strategy for a
Canadian health infostructure. The 24-member
Council includes representatives from a wide
range of stakeholders in the health sector.1
Mandate
The Council was asked to consider how information technologies and systems could best support
and promote more informed decision making by
health professionals, physicians, administrators,
planners, policymakers and individual Canadians.
The Council’s focus was a client-centred health
infostructure that meets the needs of the public,
patients, informal caregivers, health care professionals and providers, and health researchers,
managers and policymakers. Our work was not
limited to health care. It also addressed the need
to increase public understanding of broader,
non-medical determinants of health.
The Council’s mandate was to:
• develop a Canadian vision for a health infostructure and identify its basic shape and
the essential needs it should meet;
• establish national priorities for improving
the capabilities of a Canadian health infostructure to meet the needs of specific
categories of users;
• identify and prioritize issues, challenges
and barriers to the effective use of information technologies and systems in a Canadian
health infostructure and recommend coordinated approaches and solutions;
• develop a long-term strategy to achieve a
Canadian consensus for building a
Canadian health infostructure;
• generate an agenda for action by all stakeholders to advance the implementation of
the most vital components of a health
infostructure;
• advise the federal Minister of Health on
specific actions he might consider in moving
this agenda forward; and
Although our primary mandate focused on
health, we were also asked to examine the economic and industrial opportunities presented by
development of a health infostructure. However,
we ran out of time for a full exploration of these
economic issues as well as international developments. Even so, if the recommendations in
this report are acted upon, many economic and
industrial opportunities will be created.
Process and Consultations
To carry out this mandate, we divided into
working groups on vision and analytical framework, key policy issues, health information for
the general public, and technology/applications.
We discovered that the activities of these four
working groups overlapped, encouraging useful
debate and a cross-pollination of perspectives
that advanced our work.
From the outset, we realized that a strategy for a
Canadian health infostructure could succeed
only through active collaboration and cooperation among federal, provincial and territorial
governments, and among health professionals,
administrators and policymakers, from nongovernmental organizations and the private
sector as well as governments. One of our central goals was to involve all these groups and
organizations in discussing this strategy.
In February 1998, the Council took part in a
National Conference on Health Info-Structure in
Edmonton. Participants included 300 representatives of the public, stakeholders, industry and
federal, provincial and territorial governments.
The Council heard from representatives with a
wide range of views on most of the key issues
surrounding development of a Canadian health
infostructure.
1
Annex A contains a list of Council members and their
backgrounds.
Canada Health Infoway
Paths to Better Health
15
The Council also participated with the Canadian
Institute for Health Information (CIHI) and
Statistics Canada in interviewing some 500 health
sector leaders about their information needs.
Based on this work, Health Canada, Statistics
Canada and CIHI recently developed a
roadmap for health information for discussion
by federal, provincial and territorial Deputy
Ministers of Health in December 1998.
In addition, the Council’s staff have been working
actively with a recently established forum of
chief information officers or their equivalents
for federal, provincial and territorial health
departments. Health Canada officials intend to
continue this important work.
In October 1998, the Council’s Working Group
on Health Information for the General Public
convened a two-day Key Informants Workshop,
which brought together many representatives
from national, regional and community health
organizations. The resulting feedback strongly
influenced the Working Group’s recommendations.
On September 30, 1998, we released our interim
report, Connecting for Better Health: Strategic
Issues, and called for comments from all interested
parties on our preliminary thinking and recommendations. The Council wants to thank all
those Canadians, both individuals and organizations, who responded to our invitation. Your
comments have been useful and insightful. In
one form or another, many have found their
way into our thinking and this final report.
We have broadened our vision statement and
strategic framework for the Canadian health
infostructure in response to your comments.
Many recommendations also reflect your
thoughtful input in October and November 1998.
16
Canada Health Infoway
Next Steps
This final report contains the Council’s considered
strategy on how best to proceed in developing
and implementing the Canadian health infostructure. Our job as an Advisory Council is
now over. Our mandate is complete, although
individual Council members will remain active
proponents of the Canada Health Infoway and
its architects.
Critical to the success of the Council’s strategy
will be:
• the exercise of leadership by the federal
government – and in particular, the federal
Minister of Health and Health Canada – in
building cooperation and collaboration
among federal, provincial and territorial
governments;
• the full participation of the general public as
citizens, patients and caregivers;
• the active collaboration and cooperation of
physicians and health care professionals and
providers and their associations, as well as
health managers, policymakers and
researchers; and
• the involvement of non-government organizations and industry.
With our mandate completed, we pass to all
these groups the task of building the Canada
Health Infoway for the benefit of all Canadians.
Paths to Better Health
chapter one
Toward a Healthier Canada
J
ust as our health is a fundamental human
right, so has access to Canada’s publicly
administered health care system become central
to what it means to be Canadian. This report
looks at how the strategic application of information and communications technology –
through the building of a Canadian health infostructure or health information highway – can
improve our own health and the quality and
efficiency of health care across Canada.
This chapter defines a Health Infoway or infostructure, describes the values that inform the
Council’s vision of the Canada Health Infoway,
sets out the strategic framework for building it,
and underscores the critical importance of
nation-wide cooperation and collaboration in its
design and construction.
What Is the Canada Health
Infoway?
Although most people understand what “health”
is, the notions of a “health infostructure” and
“health information highway” are more
problematic.
To be precise, an “infostructure” is a combination
of the words “information” and “infrastructure” –
in this case, a health information infrastructure.
An infrastructure is a foundation on which to
build. The main concern is information – its
development, analysis, adaptation for different
purposes, communication to appropriate users,
and employment to improve health, health care
and accountability throughout the health system.
However, equally fundamental is a capacity to
provide improved communications – among the
various players within the health system, among
the general public and between both groups.
The notion of a “health information highway” –
or “Health Infoway” for short – addresses the
importance of effective communications as
well as information to improve the health
of Canadians.
In the Council’s view, the Canada Health
Infoway will become the key information and
communications foundation for our health care
system and for improvements to the health of
Canadians. Important new services will emerge
that will build on capacities for communication
over long distances and for creating, analysing
and accessing information.
In this report, we will use the terms, “health
infostructure” and “Health Infoway” interchangeably. As noted in the Council’s interim
report, health infostructure or Health Infoway
has four key parts:
• “the supporting technological framework,
including the cameras, scanners, telephones,
fax machines, computers, switches, disks,
video and audio platforms, cable wires,
satellites, optical fibre, ..., etc.;
• “the available information, whether in the
form of text, sound, images, data..., and the
applications and software needed to access,
manipulate, organize and digest it;
• “the governance, management and use of information, including standards to ensure...interconnectivity, reliability and security of systems
and the physical and technological and legal
means to protect the privacy, confidentiality
and security of personal information; and
Canada Health Infoway
Paths to Better Health
1-1
• “the people and organizations... creating the
information, developing the applications
and systems...and those using this infrastructure to deliver, maintain and improve
health-related services for all Canadians.”2
“The power of computers has
The Council agrees with this
broad view of the Canada
Health Infoway.
It is more useful to look for a definition of the
Canada Health Infoway in what we wish it to
accomplish, as set out in the Council’s strategic
framework below. In addition, any definition
will be temporary. Both the social and technological realities underlying the Health Infoway
are changing rapidly. As they transform, so too
will our vision of it.
doubled at least every 18 months,
The supporting technological
while the capacity and affordability framework is important. Over
the last 25 years, the capabilities
of communications systems have
of information and communications systems have grown
risen dramatically.... Distance
astonishingly. The power of
and geography are now less of an computers has doubled at least
every 18 months, while the
obstacle to human interaction,
capacity and affordability of
communications systems have
including health care and the
risen dramatically. And the
exchange of health information,
two technologies have converged, producing powerful
than ever before.”
applications to create, analyse,
transmit and use health information on a national, even global, basis. Distance
and geography are now less of an obstacle to
human interaction, including health care and
the exchange of health information, than ever
before. In short, these new technologies – some
already developed, some being developed now
as part of a health infostructure – promise to
contribute significantly to improvements in
health care and the health of Canadians.
However, as the definition above emphasizes, it
is not technology but human needs and the
requirements of the health care system that
drive the Council’s vision of the Canada Health
Infoway. Its policy framework is all important to
ensuring that the infostructure truly meets these
needs and requirements. This report is mostly
about what such a policy framework should
look like.
The Canada Health Infoway will also not be
simply one massive structure. It will be built
upon the foundation provided by provincial,
territorial and federal health infostructure initiatives already being designed or implemented.
Each will retain its identity and integrity.
Values and Vision
The Council’s interim report stated that the
values supporting the Canada Health Infoway
should be the same values as those underpinning
Canadians’ support for a publicly administered
health care system. The Council also stated it is
the marriage of these values with a sense of
new technological capability that provides the
foundation for a vision of the Canadian health
infostructure.
First and foremost, the Canada Health Infoway
should strengthen Medicare as a single-payer,
publicly funded health care system guided by
the five principles of the Canada Health Act –
universality, accessibility, comprehensiveness,
portability and public administration – within
the framework of a strong federal/provincial/
territorial partnership. As one of the commentators
on our interim report emphasized, the values of
fairness and compassion are the foundation of
these principles and should influence development of the Canada Health Infoway. Developing
the Health Infoway will involve collaboration
with industry and health organizations within
this context.
Privacy will be a key value in the Canada
Health Infoway. A fundamental condition for
successful health care is the trust patients have
that their personal health information will be
protected. Otherwise, few would confide in a
physician or health care provider. We believe
that the level of privacy protection on the
Canada Health Infoway has the potential to be
higher than in today’s paper-based world.
2
1-2
Canada Health Infoway
The Arlington Consulting Group, The Canadian Health
Infostructure: A Conceptual Overview (Background Paper
for the February 1998 National Conference on Health
Infostructure), pp. 4, 5.
Paths to Better Health
The Council believes that the Canada Health
Infoway should be inclusive rather than exclusive.
Caregivers, patients, the general public, health
care professionals, researchers, administrators
and policymakers should participate as users
and creators of the information. This information
should be relevant, accurate, timely and appropriate to users – and in a format they can use.
It will be critical to the success of the Canada
Health Infoway that users be involved in its
design. A commentator on our interim report
saw the need for “a spirit of cooperation and
shared responsibility (ability to respond) between
health care providers, the government, organizations providing health care and information,
and the individuals using the health care
system.” We agree entirely.
The values of collective and personal responsibility identified by the Values Working Group of
the National Forum on Health are particularly
important. Canadians want to take greater
responsibility for their own health. They want to
participate meaningfully in decisions about health
care policy. They would appreciate knowing
more about opportunities to participate in the
development of public policies affecting health
and the health care system. Due to concern about
the confusing complexity of today’s health system,
they also ask for equitable access and an efficient,
cost-effective health system that will provide
quality care in an accountable manner.3
The Council’s vision flows very much from
these values and concerns, just as it did in our
interim report. However, we have modified our
vision in light of comments on our interim
report. Our vision is now more person-centred
so that it revolves around both individuals and
communities. We have made the fundamental
concern with the value of privacy clearer. We
also wanted to stress the enormous power of the
infostructure to improve the accessibility, quality
and integration of health care services. Finally,
we wished to state more clearly the important
contribution the Canada Health Infoway can
make to the system’s accountability and costeffectiveness, as well as our understanding of
the broader health determinants.
In light of all this, our vision is as follows:
The Canada Health Infoway empowers individuals
and communities to make informed choices about
their own health, the health of others and Canada’s
health system. In an environment of strengthened
privacy protection, it builds on federal, provincial
and territorial infostructures to improve the
quality and accessibility of health care and to
enable integrated health services delivery. It
provides the information and services that are
the foundation for accountability, continuous
improvement to health care and better understanding of the determinants of Canadians’
health.
This vision is very people-focused. The individuals whom the Canada Health Infoway should
empower include individual Canadians, in their
roles as patients, informal caregivers, citizens or
consumers of health information; physicians,
health care professionals and providers; and
health researchers, managers and policymakers.
The communities to be served by the Canada
Health Infoway range from local communities to
Aboriginal communities to organizations to
geographically dispersed “communities” that
can be defined by a particular
health concern. Our vision is
about how the health of indi- “Privacy will be a key value in
viduals and communities can
the Canada Health Infoway.
be improved by the power of
information and the growing A fundamental condition for
capacity of modern communisuccessful health care is the trust
cations to deliver services.
patients have that their personal
health information will be
protected.... We believe that the
level of privacy protection on the
Canada Health Infoway has the
potential to be higher than in
today’s paper-based world.”
3
National Forum on Health, “Values Working Group
Synthesis Report,” Canada Health Action: Building on the
Legacy – Synthesis Reports and Issues Papers,
Vol. 2 (1997), pp. 6, 7.
Canada Health Infoway
Paths to Better Health
1-3
Strategic Framework
2.
The realities of the Canadian health system at
the millennium have shaped our strategy for the
Canada Health Infoway.
As discussed in our interim report, the Council’s
strategic framework is based on a recognition
that people are concerned about the health system,
want to take more responsibility for their own
health and want more accountability from the
system. It stems from a realization that lack of
coordination across the spectrum of health care
services is a major source of inefficiency and
public anxiety. It is based on the perception that
health care professionals and providers need to
keep up-to-date with the global explosion in
health knowledge. Its foundation is a respect for
provincial and territorial jurisdiction in health
care delivery and federal jurisdiction in health
protection, as well as a recognition that provincial
and territorial health information systems
represent the building blocks for the Canada
Health Infoway.
The Council has made important modifications
to its strategic framework since our interim
report was published. In our desire to focus
attention on the value of health information to
the general public, we had underplayed the
importance of physicians, health care professionals and providers to the success of the strategy.
In keeping with the importance of privacy as a
key value, we have also reshaped our strategic
framework to make privacy enhancement a key
design feature of the Canada Health Infoway.
Our strategic framework follows.
The Canada Health Infoway should:
1.
Empower the general public by:
(a) providing reliable health information
useful to Canadians as patients, informal
caregivers and citizens;
(b) ensuring equitable access to health
information; and
(c) offering opportunities for individuals
and communities to hold dialogue on
health care, engage in self-care and
mutual aid, hold the system accountable,
participate in health policy debates and
provide input into health policy;
1-4
Canada Health Infoway
Strengthen and integrate health care services
by:
(a) providing physicians, health care
professionals and providers with communications and information tools, and
the supporting environment, to improve
quality, accessibility and efficiency within
provincial and territorial boundaries;
and
(b) enabling interprovincial health care
applications and better portability;
3.
Create the information resources for
accountability and continuous feedback on
factors affecting the health of Canadians to:
(a) provide new understandings of health
determinants and the long-term impacts
of health care interventions;
(b) improve management and cost-effectiveness within the health sector; and
(c) contribute to the sustainability of our
publicly funded health care system
by supporting better health policy
formulation and analysis; and
4.
Improve privacy protection within the
health sector by:
(a) harmonizing provincial, territorial and
federal legislative frameworks for the
protection of privacy within the health
sector; and
(b) implementing fair information practices
and privacy-enhancing technologies by
all organizations with access to personal
health information.
The next four chapters will address these strategic goals. It is necessary to emphasize that right
now it is only possible, as our mandate requires,
to indicate the broad strategic directions and
principles governing achievement of these
goals. Construction of the Canada Health
Infoway is only in its very early stages. We cannot dot all the ‘i’s and cross all the ‘t’s. Social
and technological realities continue to change
rapidly. These will affect profoundly how we go
about implementing the Canada Health Infoway.
Most important of all, such an infostructure will
have a positive effect on health and health care
delivery so far reaching that its scope is now
difficult to determine. This in itself may change
the role of the infostructure.
Paths to Better Health
Cooperation – The Critical
Success Factor
European countries, Japan and the United States
are all investing in information and communications technology applications for the health sector.
In September 1998, the British government
released a plan to spend more than £1 billion
over seven years on such an initiative.
Canada’s expenditures on information technology
in the health field are expected to rise from
less than $1 billion a year in 1996 to more than
$1.5 billion by the year 2000.4 However, there is
as yet no overall strategy to guide how this
money will be spent.
As noted in the Council’s interim report,
Canada has not one, but 12, interlinked singlepayer, publicly funded health insurance systems.
They are not in competition with each other, but
many efforts to develop province-wide health
information systems – the necessary building
blocks for the Canada Health Infoway – have
occurred without sufficient consideration of
how these will fit into a Canadian system in
the future.
A Canadian strategy is needed to shape these
developments. This strategy needs to fully reflect
provincial and territorial needs and concerns,
and respect their jurisdictional responsibilities
with respect to health care delivery. It must also
support the requirements of First Nations and
Inuit communities to whom the federal government is transferring ever greater responsibility
for health care delivery.
The Council believes that the federal government
has a responsibility to foster mutual cooperation
and collaboration among provincial and territorial
governments, Aboriginal communities and all
stakeholders in developing and implementing
our health infostructure. Otherwise, an important
opportunity will be lost – to empower Canadians
on health matters, to strengthen and integrate
Canada’s health care services, to improve management, policy making and research in the
health sector, and to enhance privacy protection
within the health sector.
Recommendation
1.1 The federal government has a responsibility to foster mutual cooperation and collaboration among provincial and territorial
governments, Aboriginal communities and
all stakeholders in developing and implementing the Canada Health Infoway.
The first steps have already been taken. Federal,
provincial and territorial chief information officers
for health ministries now meet regularly to
discuss cooperative approaches to health infostructure issues. As well, Health Canada,
Statistics Canada and the Canadian Institute for
Health Information (CIHI), an independent,
non-profit organization, have released a roadmap
to address Canada’s health information needs.
This roadmap is based on consultations with
more than 500 Canadians representing health
care professionals, providers and users across
Canada.
One of the federal government’s roles is to
encourage cooperation among the provinces and
territories on matters of national importance.
Whatever the outcome of ongoing discussions
of a “social union” for Canada, this partnership
approach will remain crucial to development of
the Canada Health Infoway. Disparities between
provinces and territories in the resources available
for building a health infostructure reinforce the
importance of this federal role. Aboriginal communities face even greater resource constraints
as well as pressing health needs.
4
A.C. Nielsen and IDC Canada.
Canada Health Infoway
Paths to Better Health
1-5
Key to Report
Chapter 1 has outlined the Council’s vision and
strategic framework for the Canada Health
Infoway. Chapter 2 indicates key measures that
must be taken to ensure that the Canada Health
Infoway empowers the public. Chapter 3 lays
out key elements of how the infostructure will
help to strengthen and integrate health care
services. Chapter 4 suggests the approach that
should be taken to create the information
resources for accountability and continuous
feedback on factors affecting the health of
Canadians. Chapter 5 indicates the broad
directions to ensure that the Canada Health
Infoway improves privacy protection within
the health sector.
Chapter 6 discusses some of the key steps that
should be taken to ensure that the various parts
of the Canada Health Infoway can work together.
Chapter 7 describes the building blocks for an
Aboriginal Health Infostructure. Chapter 8
suggests approaches to making available the
technology required to build the Canada Health
Infoway. Chapter 9 promotes the Canada Health
Infoway as a strategic infrastructure investment.
Chapter 10 indicates who should carry on the
Council’s work.
1-6
Canada Health Infoway
Paths to Better Health
chapter two
Empowering the Public
T
he Canada Health Infoway should empower
members of the public to make informed
choices about their own health, their health care
and about health policy. It should also encourage
Canadians to become actively involved in the
development of public policies governing the
health system itself and other public policy
areas known to affect health.
Several conditions must be met if the Canada
Health Infoway is to fulfil these objectives. First,
its information content must match the needs
and capacities of the public. Second, the public
must have access to these new ways of conveying
information. Third, the capacity for the public to
participate in public policy development must
be strengthened. But before examining
the measures that must be taken to meet these
conditions, we will take a broad look at how the
Health Infoway can provide means to empower
the public.
A major issue in empowering the public is privacy.
Thus, empowering the public needs to revolve
around protecting the privacy – including the
identities – of individuals requesting health
information or visiting a website for that purpose.
In the Council’s view, everyone should have a
right to privacy about their health information
requests. Another issue is whether individuals
should have access to their own medical records.
In the Council’s view, such a right exists in law
and more should be done to actualize it.
Means of Empowerment
Repeated surveys over the last year have shown
that health is the “number one” concern of
Canadians – ahead of the economy, jobs, global
financial instability and the environment. Many
believe that the health system is in serious trouble
after almost two decades of reform, restructuring
and cutbacks. Some wonder how a health system
which costs some $80 billion a year can seem so
ineffective, and why there should apparently be
long waits for some surgery procedures or radiation treatments. Some want to take action, but
wonder how they can when all they have is
questions, not answers. Most believe they are
alone in their uncertainty and confusion. The
Canada Health Infoway promises to provide
people with the means to organize electronically
and get involved in health policy debates. This
involvement will be informed because the infostructure will also make available a wealth of
information on the health status of Canadians
and the state of the health care system at all
levels. These report cards will provide the basis
for accountability to the public and meaningful
input into health policy.
Canada Health Infoway
Paths to Better Health
2-1
In today’s complex health system, patients
worry who can help them and what kinds of
treatments might be best for their condition.
More people find themselves acting as informal
caregivers in the home and are asking the same
questions and also wonder where they can go
for support or respite. The Canada Health
Infoway should provide, not just over the
Internet but over the phone or through direct
contact, a wide range of reliable information in
usable form. This should include local directories of health services, report cards on health
programs and services, diagnostic aids, assessments of treatment options based on the empirical study of outcomes, analyses of drug effects
and side-effects, and so on.
Living a healthy lifestyle used to mean getting
some exercise, eating the right food and avoiding
the usual vices. Now it seems we need a degree
in sports medicine and nutrition to pick our
way through all the expert advice about exercise
programs, healthy diets, vitamin therapies and
other treatments promising a healthy life. We
can read media stories every day about some
new allergenic, antibiotic-resistant bacteria, the
carcinogenic effects of some food staple or the
environmental hazards of another common
household product. Finding out the truth is, of
course, another matter. The Canada Health
Infoway will not disclose truth, but it will
encourage the development and dissemination
of much more empirically based information on
the determinants of Canadians’ health, including
lifestyles, nutrition and social and economic
policies. It will also provide clear pointers to
credible sources of health information on
lifestyles and nutrition.
2-2
Canada Health Infoway
Nothing is more fundamental than health.
However, for centuries, members of the public
have had to rely on the compassion and expertise
of others to cure their illnesses and maintain
their health. In today’s complex, multi-billiondollar publicly administered health care systems,
the list of so-called experts has grown to include
health managers, health policymakers, health
researchers, health economists and media pundits,
etc. Many of them disagree with each other and
all claim to know far more than the public about
its own health. No wonder more and more
people express uneasiness at this “expertness”
and want to find their own sources of reliable
information as a basis for making healthy choices
and holding the system accountable. The
Canada Health Infoway has the potential to
give the general public the information it needs
to make healthy choices and reach its own
conclusions about the evolution of health care
in Canada.
Health Information for the
General Public
Observers of the health care system have long
understood that the public generally has little
say over how health services are provided and
even less over how the system is organized and
funded. It is also more widely understood, especially today, that the public’s desire to exercise
more control over its health could have very
positive health payoffs. Ensuring that people
have access to useful and reliable information
is a powerful way to strengthen their sense of
control over their own lives and support their
desire to protect their own health. Such access
can also encourage them to become directly
involved in developing public policy. New ground
rules to provide information to the public could
create a new voice within the system – one
pushing for greater accountability and more say
over how health care resources are allocated.
Paths to Better Health
An essential public good
The Canada Health Infoway has the potential
to empower the public in several ways. It can
provide information useful in understanding and
managing specific health conditions, including
information about self-care strategies. It can
encourage more informed decisions by providing
reviews of the latest scientific research evidence
on the pros and cons of various treatment
options. It can assist in finding appropriate,
locally available services. It can provide the
public with new educational opportunities –
such as on-line courses that teach critical
appraisal skills in assessing research evidence.
The Health Infoway can also provide people
with broad general information about the most
important social, economic and environmental
influences on health. This analysis could help
inform the public about the likely “health”
impacts of various public policy proposals. It
can establish new ways for holding the system
accountable for the quality of care provided –
for example, by publishing report cards on specific
performance measures. It can further steer the
public to helpful interactive resources such as
chat groups, news groups, bulletin boards and
list-servs that help people connect with others
who have common interests. These resources
also provide more immediate and individually
tailored information than can be obtained
through books and articles. Evidence also suggests
that they offer much needed support for those
coping with health problems.
It is important to understand that the provision
of relevant information on-line is not just a oneway street – with all of it coming from professionals. Lay members of the public have their
own insights to contribute. These have already
proven useful to clinicians who are active users
of these on-line resources. More and more
health professionals are communicating with
their patients via e-mail and finding that it
improves their relationships with patients.
These new communications seem to foster more
equal partnerships – the professional becomes
more a coach, a consultant or a facilitator than a
final authority.
Making health information available to the
public is an essential public good with enormous
and positive implications for transforming
Canada’s health care system. Particularly in a
publicly funded system within a democratic
society, the availability of such information is
also rapidly becoming integral to health care
and critical to holding the system accountable.
In funding decisions for the Canada Health
Infoway, making such information available to
the public should be a key component of our
publicly funded health system.
Health Information for the General Public
should include:
• general health information, including health promotion
information and information on healthy lifestyles and
health maintenance;
• health care information, including information on treatment options, drugs and pharmaceutical products, and
managing illnesses or health conditions (e.g. high blood
pressure, diabetes or obesity);
• information on public health issues, such as the quality
of air, water and food;
• accountability data or report cards on, for example, the
performance of health care services and providers;
• health policies at the federal, provincial and territorial
levels, as well as information on health policies in other
countries and policy research papers;
• data on health impacts of policies for areas other than
health; and
• information on the effects of health determinants.
Recommendation
2.1 Health Canada, in partnership with
provincial and territorial ministries of health,
should recognize in its funding decisions
for a health infostructure that health information is an essential public good which
should be readily available and accessible
to all Canadians as a component of
Canada’s publicly funded health system.
Canada Health Infoway
Paths to Better Health
2-3
A Complex Challenge
Information can be a source of power and support. However, it is not often the most important
factor influencing behaviour. If we are to
improve the chance of good information leading
to healthy behaviour in personal and policy
terms, it will be important to recognize that the
general public’s health information needs will
be very complex. For one thing, there is no such
thing as a “general public” when it comes to
health information needs. Information must be
tailored to individual users or specific groups of
users and to people’s differing needs for information over time.
Searching the Web for breast cancer
information – a scenario for the near future
After being diagnosed with breast cancer and advised to
undergo surgery, Suzanne tells her friends she needs more
information to better understand her condition and all of
the treatment options open to her. She searches the Internet
for reliable sources of information about breast cancer, its
treatment and the alternatives she faces. Through the
Internet, she also finds support groups for women with
breast cancer; she then gets in touch with Lise, a woman
who has faced the same situation. Suzanne is able to share
her experiences with Lise, who also tells her about a website
that provides report cards and assessments on treatment
options for her cancer. Suzanne checks it out. After gathering
all this information, discussing it with her physician,
and talking over her situation with her family and members
of the support group, Suzanne is able to make an
informed decision.
Changing individual and family circumstances
will create different needs for health information.
Information perceived as irrelevant yesterday
may be vital tomorrow. The ability to process
information also varies with time. For example,
most people who have received a cancer diagnosis
will admit difficulty recalling what they were
told immediately afterwards. Later, their thirst
for information about their condition and the
options facing them can be overwhelming.
2-4
Canada Health Infoway
It is usually a family or personal illness beyond
self-care solutions that gets people interested in
health information. People generally seek professional advice either in person or by phone to
identify the source of the problem and to receive
a recommendation for treatment. If the solution
is straightforward, there may be no need for
additional information – apart from advice about
how to avoid future recurrences, if solutions for
prevention exist. If the solution is not so simple
or if people want information to make healthy
lifestyle choices, they may consult other more
general sources of health information – for
example, the media or school health programs.
But these may not target the specific needs of
many individuals and may not be useful.
As already noted, the Internet and the Canada
Health Infoway have the potential to provide
more individually tailored forms of information.
However, there are already hints of public discontent with some kinds of health information
available on the Internet. For example, veteran
users tend to dismiss the more traditional
“patient education pamphlets” as “shovelware”
with very limited usefulness. While the best of
these materials may be helpful to new users,
more experienced users express a growing preference for more interactive health information
exchanges that respond to individual circumstances. This situation suggests that merely taking
print-based materials and posting them on a
website or list-serv will fall seriously short of
public expectations.
When testing and developing health information
for the public, it will be critical to recognize that
people’s health information needs differ greatly,
depending upon background, situation and
condition. Health information must be relevant
and usable to people with different cultures and
languages, levels of education, income levels,
health concerns, disability levels, cognitive
abilities and ability to use or access information
technology. Some will be patients experiencing
stress and fear. To say information and its delivery
must be user-friendly is only to scratch the
surface. The information must be developed
with the needs of each of these diverse groupings
in mind. As the Canadian Nurses Association
emphasized in its comments on our interim
report, “The infostructure should support individuals in the way they choose to relate to the
health system.”
Paths to Better Health
In many cases, public access to a range of health
information databases, however perfectly indexed,
will be insufficient for many Canadians and
would be a poor replacement for a major source
of support. That source of support is the many
intermediaries on whom the public relies extensively to meet its health information needs. In
addition to family, friends, teachers and health
care professionals, people commonly ask intermediaries – libraries, consumer groups, health
information centres and non-profit groups or
voluntary organizations – for advice in finding
or interpreting health information. People may
need help in understanding the issue, searching
for relevant information or determining whether
and how information applies to their particular
situation.
For example, consumer organizations play a
large role in helping people find the health
information they need. They will be an important
source of advice to the developing health infostructure about the types of information required.
These health intermediaries have a long record
of expertise and responsiveness to particular
segments of the public. The activities of these
organizations and groups deserve support.
Many patients and informal caregivers may also
need personal contact, at any hour of the day or
night, with knowledgeable, sensitive people who
can provide reassurance and answers to questions.
In Canada, Quebec’s Info-Santé represents an
ideal example of such a service. It is now moving
onto the Internet and discussions are under way to
make similar services available in other provinces.
People may also want health information, not to
resolve some personal or family health concern,
but to hold the health care system accountable.
For example, many citizens serve on the boards
of regional health authorities, hospitals or community health centres. They may need extensive
health system information to plan programs and
allocate resources.
It should be emphasized that these groupings
are not distinct. Patients coping with personal
health problems become motivated to join support
groups and other types of consumer health
organizations. Some will join health advocacy
groups trying to make the system work better.
Within each grouping, health information needs
will also continue to change and grow over
time. This reality suggests that the Health
Infoway will require a long period of development
and its successful evolution will involve ongoing
testing of assumptions about how people actually
use and value its offerings. Health Canada
should carry out, in partnership with other levels
of government and health stakeholders, an
investigation of the health information needs of
the general public, using a variety of culturally
and linguistically appropriate strategies.
Info-Santé enables Quebeckers with a health concern to
contact skilled nurses by telephone 24 hours a day, seven
days a week, from anywhere in the province. The service,
established in 1995, is one of a set of measures intended to
reduce use of hospital emergency wards. Info-Santé aims
at helping individuals and families take charge of their
own health and helping them obtain the necessary assistance from the most appropriate sources. In 1997-98, the
service received 2.4 million calls. In 95% of calls, users said
the call helped them find a solution. Data from evaluations
of Info-Santé indicate that every 100 calls to the service
prevent 29 inappropriate trips to emergency.
Many Canadians also lack the digital and search
skills needed to make effective use of the kinds of
health information that is increasingly available
over the Internet. Health Canada will have to
address these gaps, in partnership with other
federal departments, other levels of government
and the many consumer health intermediaries
which have been major sources of health information to the general public. A key resource in
these efforts will be the Canada Institute for
Scientific and Technical Information (CISTI), which
has a long-standing mandate to be active in the
health information area. There will be a need to
fund demonstration projects to show how the
level of access to consumer health information
can be improved. As well, it will be necessary to
support with funding the efforts of consumer
and health intermediaries to develop and provide
access to consumer health information.
Canada Health Infoway
Paths to Better Health
2-5
Health Canada’s Canadian Health Network
(CHN) represents a significant first step toward
meeting many of the general public’s health
information needs. It provides people with a
single window – including a multilayered
website – on timely and credible consumer health
information. The goal is to create an integrated
health information service managed and sustained
by many partners, including provinces and
territories. This initiative deserves support.
Standards for Health Information
Recommendation
More complicated issues of trust emerge when
one considers the differences among people –
including scientists and health care professionals –
on health issues. A wide assortment of conflicting
opinion, analysis and viewpoints exists on many
health questions. For example, some believe in
the effectiveness of alternative medicine; others
reject it in favour of conventional medicine.
How can the public assess the reliability of such
information? What kind of guidance would help
them verify the quality of information available
through the Health Infoway?
2.2 To understand better the information needs
of the public, strengthen people’s ability to
access and use evidence-based information,
and provide mechanisms for public access
to reliable health information, Health
Canada should:
(a) undertake, in partnership with other levels
of government and health stakeholders,
an investigation of the health information
needs of the general public, using a variety
of culturally and linguistically appropriate,
interactive and ongoing strategies;
(b) promote, in partnership with other federal departments and agencies (e.g. the
Canada Institute for Scientific and
Technical Information) and provincial
and territorial departments and agencies,
the ability of Canadians to access and
use evidence-based, non-identifiable
health information to meet their health
information needs and concerns by
establishing a fund that will support
demonstration projects;
(c) establish a fund to allow consumer and
health intermediaries to develop and
provide access to consumer health information; and
(d) support the Canadian Health Network
as one mechanism for providing
Canadians with access to reliable health
information.
2-6
Canada Health Infoway
Canadians need to be able to trust the health
information they receive through the Canada
Health Infoway. Several questions are relevant
to this question of trust. For example, what kind
of evidence supports the information? Is the
source of the information authoritative? Is the
information produced to educate and inform or
to promote a product or service?
The ways people learn can also affect how they
process information. For example, some may find
a personal testimonial to a product or service far
more comprehensible and convincing than a
review of extensive, carefully controlled clinical
trials.
Many of these issues could have potentially
serious implications. For example, what happens
if inaccurate information obtained through the
infostructure results in harm to a member of the
public. Is there a legal basis for a lawsuit? Are
disclaimers sufficient to prevent legal action?
At the February 1998 National Conference on
Health Info-Structure in Edmonton, there was
consensus that national leadership was required
to provide guidance to consumers about the
quality of information available through the
health infostructure, including the development
of a rating procedure to identify “recommended”
sites for health information. As the Ontario
Prevention Clearinghouse pointed out in its
comments on our interim report, “Consumer
information must be transparent as to its source,
credibility and ownership. Consumers value
standards, relevance and responsiveness, and
attribute confidence to information which has
the support of Canada’s non-governmental
organizations and governmental organizations....”
In the Council’s view, Health Canada, in partnership with provincial and territorial ministries
Paths to Better Health
of health, should take the lead in ensuring
development of standards or guidelines to
distinguish between objective, evidence-based
health information and information intended to
promote a product. These guidelines could be
developed into criteria for rating websites that
provide health information.
Recommendation
2.3 Health Canada, in partnership with provincial and territorial health ministries, should
take the lead to:
(a) ensure that standards/benchmarks/
guidelines are developed and implemented to allow the general public to
distinguish objective, empirically based
health information from information
intended to promote a product; and
(b) expand these standards/benchmarks/
guidelines eventually to include rating
criteria for websites providing health
information.
Commercial activity on the Internet and World
Wide Web poses more challenges. Products and
services are being advertised and sold in an
electronic environment currently not subject to
the kinds of regulatory controls that exist in
more traditional marketplaces. For example,
drugs not approved for sale in Canada can be
ordered from other places with less stringent
regulations. This availability raises health and
safety issues. Federal, provincial and territorial
governments are working to develop a legislative
and regulatory framework for electronic commerce on the Internet. However, special
considerations are required for commerce in
health information and health products to
protect consumers adequately.
Recommendation
2.4 Health Canada should work with other
health stakeholders to:
(a) ensure that health concerns such as consumer protection with respect to health
products and services are adequately
reflected in the present work of federal,
provincial and territorial governments to
develop legislative and regulatory frameworks for electronic commerce on the
Internet; and
(b) take appropriate alternative action if
health and safety issues are not adequately
reflected in this work.
Removing Barriers
Canada is an officially bilingual country, but
the Internet has much less French- than Englishlanguage information on health and other subjects.
Existing search tools on the Internet will not
specifically seek out health information in
French. However, Canada is a world leader in
the development of multilingual search software.
In the Council’s view, it will be necessary for
government to take steps to encourage the
development of an Internet search capability
for health information in French.
Recommendation
2.5 Health Canada should work with other
federal departments and agencies and
specialists in the field to encourage
development of:
(a) an Internet search capability which is
specific to health and, at a minimum,
fully and equally meets the needs of
Canada’s English- and French-speaking
communities; and
(b) Internet content on health in French and
English.
Other linguistic groups, particularly Aboriginal
groups, also have difficulties finding health
information in their traditional languages. In
some Canadian jurisdictions, these are recognized as official languages. Equity demands that
governments take a role in ensuring that these
linguistic needs are met.
Canada Health Infoway
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2-7
Part of the solution with respect to French and
other languages may lie eventually in developing
technologies for automatic translation, in which
Canada is an acknowledged world leader.
Publicly funded, federal government collections
and databases already contain a wide array of
health information which would be useful to
members of the public, to assess their own health
situation and the performance of the health care
system. However, policies and procedures to
recover the costs of collecting and creating this
information and to bring in revenue have made
this information too expensive for many people.
Even the non-profit organizations representing
these people find the costs too high. Given the
fundamental importance of reliable health information to empower people in the field of health,
it is inconsistent that people should be charged
extremely high rates for access to public collections and databases. In the Council’s view, the
policies and practices creating this situation
should be reviewed.
Recommendation
2.6 Health Canada, in partnership with representatives of user communities such as the
Canadian Association of Public Data Users,
should take the lead in approaching
Treasury Board and other federal departments and agencies to review the policies
and practices with respect to cost recovery
and revenue generation governing the
availability and redistribution of publicly
funded collections, statistical databases and
other government information relevant to
health.
Ensuring Access
It is vital that there be affordable, equitable
access throughout Canadian society to the
Canada Health Infoway.
Policies to encourage access should consider
factors such as geographic location, cognitive
ability, language, physical disability, cultural
origin, educational background, age, gender,
income, social differences, technophobia, and
traditional and digital literacy. They should also
consider the stress many patients and caregivers
face in seeking information and support.
Access policies must focus not just on delivery
technologies but on the format, level of difficulty,
language and ethnocultural assumptions that
will determine the usefulness and acceptability
of information for different groups.
Access objectives are easier to achieve because
of the rapid advances in communications and
computer technology over the last 30 years.
These promise a growing capacity to overcome
traditional barriers of distance and geography.
These will also provide all Canadians with better
health information and opportunities to participate in formulating and implementing health
policy. The most visible example of this technological revolution is the Internet. The Internet is
rapidly entering Canadian homes and provides
a unique tool to exchange information and
connect communities of like interest across
the country.
However, according to Statistics Canada, only
29.3% of Canadian households had in October
1997 at least one member who typically used a
computer to communicate every month at
home, work or another location. A range of
characteristics, including lower income and
educational attainment, relate to lower use of the
Internet. Any access policy relying exclusively
on the Internet must address the disadvantages
faced by these groups.
Other obstacles to access may be equally serious.
For example, patients and informal caregivers
may be under stress when seeking information
and may need direct contact with someone to
help them through a difficult situation.
2-8
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Paths to Better Health
Multiple modes of accessing many different
sources of health information will be critical to
ensuring that the Canada Health Infoway actually
does empower the public. Modes of access
could include not just the Internet, but also
phones, faxing traditional hard copy and direct
contact with sensitive, knowledgeable staff. It is
clearly important for governments to strike a
balance in their mechanisms of communication.
Recommendation
2.7 Investments in the digital networking of
the Canada Health Infoway should be
balanced by appropriate investments in the
other (i.e. non-electronic) mechanisms for
sharing information that can lead to
improved health.
Although the speed, reach and cost of a particular
technology will always be important, how the
information is presented, the language used and
the ethnocultural assumptions underlying the
information can all present total barriers to use
by many Canadians. Equity demands the
removal of such barriers.
Access policies will also have to acknowledge
the importance of user friendliness in technology
and the public’s need for instruction in its use.
For reasons of equity, such policies must take
into account the different needs of women and
the particular challenges facing people with
disabilities, too low an income, a language other
than English or French, or low levels of literacy.
The Information Highway Advisory Council
(IHAC) in its 1995 report, Connection Community
Content: The Challenge of the Information Highway,
saw “universal, affordable and equitable access”
as the first principle that should govern policies
for access to facilities and services on the
Information Highway. IHAC saw this principle
as involving “...local availability of basic access
facilities for the delivery of Information Highway
services at reasonable cost, regardless of geographical location; equitable opportunity for all,
including people with disabilities and groups
with special needs, to access and use the
Information Highway.”
The Council strongly agrees with this principle.
Like IHAC, we believe that this principle means
that, for basic telecommunications infrastructure
such as the telephone network, the government
should ensure that every household continues
to have access to it. For new kinds of networks
such as the Internet, this means that access
should be possible in every community and
neighbourhood, either at a local library, health
facility or some other public site, on an affordable, equitable and sustainable basis. In future,
if the Internet evolves into a basic network comparable to the telephone today, the government
may have a role in ensuring that it is as widespread in households as the telephone is now.
Recommendation
2.8 To ensure that health information is accessible
on a universal, equitable and affordable
basis, it is vital that:
(a) the federal government continue to
ensure universal, equitable and affordable
access to existing and future basic
telecommunications infrastructure; and
(b) Health Canada, in partnership with
provincial and territorial ministries of
health, take a leadership role in ensuring
that health information and health care
applications for the general public are
developed in such a way as to be
accessible to all citizens, irrespective of
their geographic location, income, language, disability, gender, age, cultural
background or level of traditional or
digital literacy.
An important source of access to health information will be the many community networks
and freenets in municipalities across Canada,
especially in urban areas. These provide nonprofit, community-controlled “electronic public
spaces” as avenues for citizen participation and
community development.
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2-9
Government policies and regulations have long
recognized the importance of such “public
spaces.” Since the 1970s, Canadian cable companies have been expected to make community
cable channels available to non-profit groups
and institutions in their localities.
In the Council’s view, there is a real need to
establish a “Canada Health Space.” This would
be a universally accessible health information/
communications commons owned by Canadians
and operated in the public interest. The Canada
Health Space would be a place where Canadians
can communicate and share information and
experiences. In it, every individual or organization with products or activities affecting health
would report on their health implications. The
Canada Health Space would be operated by
health intermediaries – libraries, community
health information centres, clinics, health promotion organizations, etc. – which represent major
sources of health information for many members
of the public. The key role of the intermediary
is apparent in this description of a librarian’s
function by an individual commenting on our
interim report, “Librarians have the knowledge
skills to evaluate, collect and retrieve appropriate
material; and the people skills to facilitate
equitable access and interpretation over a wide
range of abilities.”
The Western Health Information Project
(http://ycn.library.ns.ca/hosp/health.htm) is a collaboration
by local hospital and public libraries, Yarmouth
Community Net and a school of nursing program which
supports consumer and wellness information for the
community. This Internet-based project includes access
to locally developed consumer health information, a
directory of local health agencies, links to health-related
websites and access to the Infotrac Health Reference
Centre database. It complements and links with existing
library collections.
The networking of these organizations represents
a real opportunity for Health Canada to fulfil its
own statutory responsibility to inform the public.
Already, many of these organizations assist
Health Canada in its health promotion activities.
They will be much more effective if they can
share information and link together in serving
the public, thereby providing access to a much
wider range of information. For these reasons,
the networking of these health intermediaries
deserves support, including adequate funding
and technical support for their efforts to provide
the public with quality health information.
One source of support for these efforts could be
government’s own determination to provide
more of its own information and services electronically. As the Information Highway Advisory
Council pointed out in its 1997 report, Preparing
Canada for a Digital World, this move to electronic
modes of delivery shifts distribution costs to the
citizen, including the non-profit community
networks and freenets that provide significant
citizen access to government information and
services. The Council believes that government
should consider ways of supporting community
networks which deliver government services
and information, as was recommended by the
Information Highway Advisory Council in 1997.
Such compensation should be regarded as a
normal cost of doing business.
Recommendation
2.9 Health Canada, in partnership with other
federal departments, provinces and territories, and health stakeholders, should:
(a) ensure establishment of a “Canada
Health Space” as a universally accessible
health information/communications
commons;
(b) capitalize on and support the nation-wide
networking of health intermediaries;
(c) ensure adequate funding and technical
support to health intermediaries to
develop and/or maintain their capacity
to provide the general public with timely, credible and “understandable” health
information and to assist in overcoming
access barriers; and
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(d) accept, as a normal budgeted cost of
doing business electronically, the need to
sustain health intermediaries and support
them for providing affordable electronic
health information services to disseminate
health promotion, health protection and
other kinds of health information to
wider publics, just as such costs have
been accepted in the paper-based world
in the past.
The Arthritis Society of Canada has established an encyclopedic, interactive website (www.arthritis.ca) to try to
meet the needs of Canada’s arthritis community. Content
in both official languages includes articles on types of
arthritis, medications, pain management, surgery, everyday
living strategies, exercises and much more. The site receives
an average of 15 000 “hits” daily. Since many Canadians
still do not have direct access to the Internet, The Arthritis
Society’s 800 information line links them to the website’s
vast inventory of educational information. Callers anywhere
in Canada dial a single number and are automatically
routed to the Society provincial office closest to the caller’s
area code. Trained telephone volunteers – many of whom
have arthritis – respond to public queries by downloading
pertinent information from the site for direct discussion
with callers or for distribution via fax or mail.
Much has already been accomplished through
the federal government’s connectedness agenda
in removing technological obstacles to access. The
Community Access Program (CAP), SchoolNet
and First Nations SchoolNet – all partnership
efforts by Industry Canada, provincial and
territorial governments, communities and the
private sector – are now connecting all Canada’s
schools and libraries to the Internet. First Nations
SchoolNet has already linked all interested
schools in First Nations communities by means
of a direct personal computer satellite service
that provides high-speed access to Internetbased material. By the year 2001, CAP will have
created 10 000 public access sites in rural/
remote communities and urban neighbourhoods.
In 1997, Industry Canada set in motion a
three-year program to offer connectivity to
10 000 charitable and selected non-profit organizations – including health organizations. Health
Canada, in partnership with provincial and
territorial health ministries, should work closely
with Industry Canada to make public and notfor-profit health care institutions aware of these
programs.
Because communications and computer technology is evolving so quickly, it will be a continuing
challenge to ensure the health sector keeps
up-to-date. In many areas, we are still at the
research stage of learning how to integrate these
technologies into health networks or use them
to improve access to health services and information. For example, satellite technology may
have potential to help improve access to health
services the federal government is responsible
for – such as health care services in First Nations
communities. Both Health Canada and provincial
and territorial health ministries should work
with sources of technological expertise such as
Industry Canada and the Canadian Network for
the Advancement of Research, Industry and
Education (CANARIE) to explore further
integration of new technologies into health
networks.
Recommendation
Recommendation
2.10 Health Canada, in partnership with
provincial and territorial ministries of
health, should work closely with Industry
Canada to ensure that all public and notfor-profit health care institutions in Canada
are aware of:
2.11 As a means of ensuring more equitable
access to health information and health care
services, Health Canada, in partnership with
provincial and territorial health ministries,
should work closely with the Canadian
Network for the Advancement of Research,
Industry and Education, and Industry
Canada to investigate the further integration
of new technologies, including satellite technologies, into health networks at all levels.
(a) the Community Access Program; and
(b) how they can apply for resources to
locate public electronic access facilities
on or near their premises to help ensure
that their clients can use on-line health
information.
Canada Health Infoway
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2-11
Public Input and
Accountability – Promoting
Citizen Engagement
The Internet is now connecting communities
with like interests, independent of distance and
at very low cost. It allows people to exchange
information electronically, share concerns,
develop common positions and take collective
action on issues, whether at the local, provincial,
territorial, national or international levels. This
process enables the public to provide effective
input to policymakers and hold them accountable.
Taking advantage of the Canada Health Infoway
to generate policy research data and improve
the data’s availability should also help to ensure
more informed public input on health policy.
“It is important for the National Health Service to grasp
the extent to which the public wants access to comparative
clinical outcome information relating to local National
Health Service facilities. Despite the acknowledged difficulties in ensuring fair comparisons, the arguments for
tackling these difficulties and making such information
available are irresistible.”
Information for Health:
An Information Strategy
for the Modern National Health Service
London, England, September 1998
In addition to demonstrating a commitment to
democracy and giving citizens a renewed sense
of ownership in and commitment to public institutions and processes, there are other reasons
for policymakers to seek input from consumers.
When designing consumer-sensitive programs
and services, policymakers can benefit significantly
from consumers’ unique information about their
experiences with the health care system. They
can also often bring fresh perspectives to the
traditional policy debates between funders and
health care providers.
Federal, provincial and territorial health ministries
frequently ask for stakeholder input on policy
changes, including input from the public.
Generally, these consultations work with
established groups and organizations as well
as professional associations. Most observers
agree that the consumer voice in health care is
relatively weak.
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Canada Health Infoway
In recent years, many of the large national consumer organizations have had to cut back their
activities because of constrained resources. The
smaller number of community-based consumer
groups are too fragmented and individually too
small to exercise much influence over policy.
Most are voluntary organizations largely dependent on volunteers’ time, energy and financial
resources.
The public is also diverse. People with disabilities,
seniors and women, for example, will each have
a unique view on the shaping of health policy,
the Canada Health Infoway and the information
it carries. Typically, people who become involved
are patients or relatives of patients who have
concerns about how the system meets or fails to
meet their needs. Some groups aim at filling an
important gap in service – say, providing information and mutual support to people coping
with, for example, mental illness, AIDS or
endometriosis. Others believe they have been
harmed by medical treatments such as blood
products or breast implants. Still others focus on
larger groups such as women and seniors. The
latter will often address not just health care but
areas such as housing, income support, child
care and the environment which have effects
on health.
In the Council’s view, it is necessary to establish
ongoing mechanisms to carry out policy research
and to formulate health policy options. As a
result of a recommendation by the National
Forum on Health, the Canadian Institute for
Health Information (CIHI) has recently begun a
Canadian Population Health Initiative to do
some of this work. When the steps for action in
the report Health Information Roadmap: Responding
to Needs are implemented (see Chapter 4), CIHI
and others will be in a stronger position to do
research and analysis as a basis for report cards
to the public on national health status and the
performance of the health system.
The Council believes there is also a need for an
independent office to take on a policy advocacy
role, to involve and link together these diverse
publics and allow them to express their concerns about health policy and the health system
as a whole. This office could be a virtual or a
physical organization.
Paths to Better Health
Recommendation
2.12 Health Canada should establish a nongovernmental office of citizen health advocacy to coordinate and facilitate input and
participation by the general public into
health policy deliberations, including policies
relating to the Canada Health Infoway. This
office would:
(a) coordinate and facilitate the linking of
community-based voluntary health
organizations and health consumer
organizations to enable or enhance their
capacity to participate effectively in
health and public policy development;
and
(b) constitute an ongoing, stable mechanism
for obtaining reliable and representative
input and feedback from the health
consumer sector.
A possible model for this office is the Consumers’
Health Forum in Australia. It was established in
1987 in response to petitions from consumer and
community groups that wanted to have more
influence on health policy. The Forum does not
duplicate the work of existing organizations.
It takes on issues the entire consumer health
movement wishes to act on together. Its membership is restricted to organizations directly
accountable to consumers. Whatever model is
used for a Canadian office of citizen health
advocacy, it will be crucial that Health Canada
proceed sensitively to ensure that the consumer
health community can take ownership of the
organization and feel that it responds to consumer health needs.
A key role of this office would be to ensure
production of assessments and evaluations of
the health system that are relevant and accessible
to the general public. These could help set the
agenda for, and serve as the basis for critiques
of, the report cards prepared by CIHI and perhaps
others in collaboration with provincial governments. These report cards would detail the
performance of health care organizations, the
outcomes of interventions and the actual health
impacts of health policies and policies for other
areas (see Chapter 4).
Recommendation
2.13 The office of citizen health advocacy
should ensure production of assessments
and evaluations of health sector activities
relating to the general public. These would
include setting agenda and critiques for
report cards on the performance of health
care programs and services, outcomes of
interventions and treatments, and the
actual health impact of health policies
(See also Recommendation 4.2).
Canada Health Infoway
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2-13
chapter three
Strengthening and Integrating
Health Care Services
I
n addition to strengthening health care by
encouraging a more informed and involved
public, the Canada Health Infoway will directly
contribute to significant improvements in health
care services. Its essential building blocks, the
provincial and territorial infostructures, will help
lay the foundation for great improvement in
integrating and coordinating health care services
within each province or territory. Further
enhancements will occur as the infostructure
takes on a pan-Canadian dimension.
This chapter looks at the key steps that must be
taken to transform this promise into reality. It
also examines some of the potential practical
contributions the infostructure can make to health
care services. Vital to success will be measures to
ensure that health care professionals and
providers can use these new communications
and information tools to improve the quality,
accessibility and efficiency of health care services.
Some of these tools are far from fully integrated
into the present health system. Telehealth, an
application important to achieving these
improvements to health care services, still faces
barriers which will have to be overcome. Another
crucial application is the electronic health record
which will need to be implemented in a manner
that fully protects personal privacy.
Health Care and the Canada
Health Infoway
The provincial and territorial health infostructures
of the Canada Health Infoway have the potential
to contribute to improving health care services,
including public health services.
Currently, health care services are organized like
a series of silos – with one silo for primary care,
another for acute care, a third for ambulatory
care, a fourth for home care, and yet another for
long-term care. This approach works well – as
long as patients do not move from one silo to
another or if no one cares what it adds up to in
terms of effective and efficient patient care. In
the real world, of course, we care very much
and everyone knows that in a normal recovery a
patient will move from one silo or kind of service
to another. In the present situation, continuity of
care is difficult to achieve and it is all too easy
for a patient to slip between the cracks or enter
a new silo with no record of his or her previous
treatment. As the Canadian Pharmacists
Association pointed out in its comments on our
interim report, “It is common for changes to a
patient’s medication regimen made in hospital
to be reversed or ignored when that patient
moves back into the community, simply because
Canada Health Infoway
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3-1
the information does not reach the primary care
physician.” Although full integration of health
care service delivery involves serious commitment
at all levels, the Canada Health Infoway promises
to make it much easier for a patient to move in a
fully supported fashion from one care setting to
another. Telehealth applications will allow health
care professionals and providers to remain in
close communication with each other and
exchange information efficiently, even though
each may work in a different setting. The development of an electronic health record will allow
patients to ensure access – subject to stringent
privacy safeguards, confidentiality obligations
and security practices – to their medical histories
by health care professionals and providers in
different care settings.
The health of many people, particularly elderly
persons, fares better in their homes outside an
institutional setting, but only if the right sorts of
social supports and levels of care are available
in the home. Home care services are not now
evenly available across the country. Even within
particular provinces and territories, many people
cannot get the home care they need and deserve.
This problem will only grow worse as the population ages. The Canada Health Infoway can,
through applications such as tele-homecare,
help provide important opportunities for
improvement and innovation in home care.
According to the Canadian Home Care
“The continually changing and expanding body of medical
information is increasingly difficult to master. In 1985,
Covell and colleagues documented the obstacles physicians
face using books and print media as sources of information
in practice. Thirteen years later, there are 9.1 million
MEDLINE citations with approximately 31,000 more
added each month. Combined with the psychological,
sociological, and administrative complexities of medical
practice, this rapid proliferation of information pressures
physicians to make decisions at the margin of what they
remember and know. Compounding this problem, changes
in health care delivery require practitioners to make more
important and complex decisions in less time. Physicians’
trouble in applying current health care evidence effectively
will almost certainly worsen given these trends. Weed calls
this failure to use current health care evidence in the
practice of medicine ‘avoidable ignorance’.”
Association in its comments on our interim
report, “the potential of video and audio links
and technologies such as telehealth will enable
providers to deliver home care services very
differently in the future, and likely in a much
more effective and efficient way. Providers will
be able to monitor and assess clients without a
physical visit in some cases, and, when in the
home, providers can access specialists and other
members of the care team through the technology
of video recorders, computers and modems.
Individuals will receive care in less intrusive
ways, yet still be closely connected with their
providers and the specialized expertise when
required. These advances can only help to
improve the health of Canadians....”
Access to care in rural and remote areas poses a
continuing challenge to the Canadian health
care system. Health care professionals and
providers in rural and remote areas often have
to make difficult decisions on their own. They
may also lack access to urban facilities for training and upgrading skills, with the result that
many return to the city. Patients must often
make expensive trips to the city to receive specialized diagnoses and treatment. Through
telehealth applications, the Canada Health
Infoway has the potential to support diagnosis
and even treatment of patients in rural and
remote communities by specialists based in
cities. The same technologies can ensure that
health care professionals and providers receive
expert support when making difficult decisions,
while opening up new opportunities for training
to maintain and upgrade their skills.
“Medical Information on the Internet,” Editorial,
Journal of the American Medical Association,
October 21, 1998
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Supporting the
Health Care Team
The professionals and providers who actually
deliver care are central to health care. Without
their active support and use of the new tools
offered by the Canada Health Infoway or its
provincial and territorial counterparts, little will
change and evidence-based decision making
will remain more a promise than a reality.
Health care is an information and communicationintensive activity. Indeed, as noted in Chapter 1,
because the amount of specialized information
for health professionals is growing so fast, it has
been estimated that practitioners would have to
read 19 articles a day, 365 days a year, in order
to keep up-to-date. This reality may explain
why, according to a 1998 Canadian Medical
Association (CMA) survey, physicians are rushing
to embrace the Internet. Between 1997 and 1998,
the proportion of physicians using it grew from
41% to 56%. More than half now use e-mail
regularly, up from 37% in 1997. Of the physicians
accessing clinical practice guidelines through
the CMA’s database-search services, 49% said
these guidelines had changed the way they
practise.
For such services to encourage evidence-based
decision making, the health care information
made available must be timely, accurate, accessible
and user-friendly. Equally important, health care
professionals and providers across the entire
spectrum of health care must be encouraged
through incentives to carry out their responsibilities in these new ways. The question of incentives
is all-important because many professionals and
providers are wary of the new technology or see
little reason to change their ways.
As an administrator from one regional health
authority put it when commenting on our interim
report, “Primary care is a vital part of the infostructure equation. Technology adoption is a
significant barrier when attempting to integrate
information with this group. I believe more
incentives need to be offered via the provincial
and federal governments to encourage the primary care group to become active participants.”
The kinds of incentives that should be made
available will require careful consideration.
They should respond to the real needs of the
physician and health care professional and
provider community.
Recommendation
3.1 Federal, provincial and territorial governments should develop and test incentives
to encourage and assist health care professionals and providers to adopt health
infostructure applications. These applications
include clinical decision support tools,
health information systems and telehealth.
Most health care professionals and providers
will also need training in how to use these new
information and communications tools. In
addition, the greater the range of health care
professionals and providers involved in testing
such tools, the more likely they are to be useful
and user-friendly and that people will actually
use them. A communications professor saw a
need for “participatory design processes... where
those working with health information technologies (e.g. nurses, doctors, administrators, health
researchers) assume an active role in the development of health information technologies.”
Governments, in collaboration with associations
of health care professionals and providers,
should take an active role in ensuring that these
opportunities for training and testing of new
applications exist.
“Today, family physicians are key recorders and managers
of personal health information.... It is our opinion that
some of the most critical collaboration required for the fulfilment of the Council’s vision re health infostructure are
those with front-line family physicians and their representative organizations. It is our sense that there has been little by way of candid acknowledgement of the importance
of such collaborations in the past.”
College of Family Physicians of Canada,
commenting on the Council’s interim report
Canada Health Infoway
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3-3
Recommendation
3.2 Federal, provincial and territorial governments, in collaboration with associations
representing health care professionals and
providers, should provide funding for:
(a) professional education and development
opportunities for health care professionals
and providers across the spectrum of
health care to acquire the skills needed
for optimal use of health information
and communications systems; and
(b) developing, piloting and evaluating tools
to support clinical decision making
across the spectrum of health care.
Electronic decision support systems –
a scenario for the near future
A family physician has been asked by a 54-year old woman
to advise her whether she should take hormone replacement
therapy (HRT). Many of her friends have been taking HRT
since they became menopausal, but she is uncertain about
the risks. Her physician takes a detailed history to assess
her risks and tells his patient that he will review the most
current research findings in medical information databases
and then enter her information into a risk assessment program that will calculate the risks and benefits of her taking
HRT for given periods of time. Between them, they will
then be able to decide whether she should be on HRT and
for what period of time. The physician is satisfied that he
will be able to give this patient the best advice possible
and that he will have increased his competence in this area
to the benefit of his other patients. The patient will have
the benefit of the latest information from well-conducted
studies and know that the information has been converted
to meet her individual needs.
These changes will be welcomed by some and
resisted by others. Good will across institutional
and professional boundaries will be vital to
ensuring that these new systems contribute to
strengthening health care services. While many
of these issues will be successfully tackled by
professional bodies and institutions, addressing
some may require an ongoing process. In the
Council’s view, it would also be prudent to put
in place a labour force strategy to address the
effect of these changes on health care professionals, providers and workers, and to make
sure that the necessary skills and knowledge are
in place. Indeed, the Canadian Health Coalition
called on the Council to “recommend that the
federal government initiate a health labour force
development strategy to ensure that training
and skills needed to support a national health
infostructure are available within the public
sector.”
Recommendation
3.3 Health Canada, in partnership with
Human Resources Development Canada,
other federal departments, provinces and
territories, health worker organizations and
health professional associations, should
initiate a labour force strategy to:
As noted in the Council’s interim report, it is
important to recognize that living, breathing
human networks underpin infostructures and
communications networks. The introduction of
these new infostructure applications will likely
lead to integration of health care service delivery.
It will also likely shift the balance of responsibilities among health care professionals and
providers and among them, patients and the
general public. A similar shift may occur among
health institutions such as hospitals, community
health institutions and long-term care facilities,
as well as among them and the home.
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Canada Health Infoway
Paths to Better Health
(a) ensure the skills and knowledge base
necessary to build, use and support the
Canada Health Infoway are available;
and
(b) address labour policy, employment policy
and occupational health and training
issues.
Electronic Health Records
Patient-based health records are a fundamental
cornerstone of provincial and territorial health
infostructures. However, there is potential for
serious violations of privacy. The Council believes
that, with particular care, electronic health records
can actually enhance privacy protection, improve
patient care, enable telehealth, empower citizens
through greater control of their own health
records and serve as the foundation for an
ever-improving information and evidence-based
health system. Some of the Council’s conclusions
and recommendations on how the Canada
Health Infoway can ensure improved privacy
protection appear here; others are set down in
Chapters 2, 4 and 5.
The Need for Electronic Health
Records
To understand the importance of an electronic
health record, it is necessary to understand the
present situation.
Obviously, no one should make a serious clinical
decision without full knowledge about the
patient. Right now, most medical records are
handwritten by health care professionals.
However, they are not always easy to read.
Many first-time patients at physicians’ offices
and clinics arrive with no medical record – only
their subjective impressions. The same holds true
for those who return after a visit to a hospital, a
procedure or other intervention. This absence of
information may make diagnoses difficult and
can cause physicians and health care professionals
to order batteries of tests and x-rays which may
be redundant, potentially unnecessary, expensive and even health threatening.
When people go to an emergency ward or a
clinic outside their home town or province, it is
often impossible for them to arrange access to
their medical records by that local practitioner
because these records are usually locked up in
their own physicians’ offices. Such barriers go
against both the spirit and the letter of the principle of portability found in the Canada Health Act.
The difficulty of physicians and other health
professionals and providers to get access to their
patients’ medical histories is due in part to the
way the health care system is organized. As
already noted, acute care, ambulatory care, mental
health care, long-term care, physicians’ offices
and home care each form their own vertical silos
and the horizontal communication among them
is less than perfect. While a record of medical
interventions and tests may exist in one silo, it is
often difficult to fulfil a patient’s request that
this record be available in a timely fashion to a
professional in another silo or that all his or her
medical history be available to a particular
practitioner.
Electronic health records – a scenario
for the near future
Stan visits a heart specialist for the first time following a
referral from his family physician based on the results of
some tests. Fortunately for Stan, the specialist had a cancellation and was able to see him in a few days. The heart
specialist asks Stan several questions about the test results
undertaken by his family physician. Stan is unable to
provide all of the necessary technical information to the
specialist. The specialist asks his permission to review his
electronic health record so that they can see the exact test
results. He agrees and the necessary information via the
electronic patient record is provided for the specialist to
provide an informed analysis of Stan’s condition.
A provincial or territorial electronic health
record of patients’ past medical histories, electronically accessible to health care professionals
and providers, but only on a “need-to-know”
basis and under the strict control of patients,
would eliminate most of these serious gaps in
the information needed for patient care. Filling
these gaps would lead to significant improvements in the quality, accessibility and efficiency
of health care services. With an electronic health
record, it would be easy for patients to ensure
that physicians and other professionals and
providers in every silo of the health care system
had timely access to relevant portions of their
medical records. Such electronic health records
can pave the way to integrate and coordinate
health care services delivery around patients
and their needs.
Canada Health Infoway
Paths to Better Health
3-5
Improved Privacy Protection
The Council is convinced that the electronic
health record can be placed within a legislative,
institutional and technological framework that
will result in improved privacy protection within the health sector. The institution of fair information practices and measures to ensure compliance with them will be critical to this framework. As Manitoba’s Ombudsman points out
and the Council agrees, these should include:
“(1) self-audit procedures for health care
providers, institutions and agencies; (2) monitoring and oversight activities by external, independent bodies; and (3) criminal sanctions and
civil law remedies for breaches of privacy.”
“The historical focus on acute care led to the development
of data collection and information retrieval mechanisms
suited to the acute care setting. The application of information and communication technologies to all sectors in the
health care continuum will benefit the public by
reducing redundancy in information collection and storage
and by facilitating continuity of care across care settings.”
Ottawa-Carleton
Community Care Access Centre
When patients now confide in a physician or
health care professional or provider, they trust
that this information will be held in confidence.
However, unless patients raise the issue there is
sometimes uncertainty about what portion of
this information will be passed on to other
physicians and professionals and providers
involved in a patient’s care.
With an electronic health record, we believe that
this situation will be improved. Physicians and
health care professionals and providers should
only receive personal health information on a
“need-to-know” basis. In other words, they
should be able to see only that portion of an
electronic health record which they need to
know so they can contribute to a patient’s care.
In addition, with an electronic health record, the
principles governing informed consent will
have to be spelled out much more clearly. In the
Council’s view, patients should be able to exercise
control over what portion of their electronic
health record is seen by other professionals
and providers.
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Canada Health Infoway
In addition, patients should have access to their
own health records – a right under common law
and in some provincial legislation. Such provisions should form part of all privacy protection
legislation for the health sector. If people have
access to their own personal health information,
they will know what information about them
has been collected, used and disclosed. They
will also be able to verify that the information is
accurate, complete and up-to-date. Fair information practices require any person who collects
personal information to take reasonable steps to
ensure the information is accurate, complete,
up-to-date and appropriate for the purposes for
which it is to be used or disclosed.
For electronic health records to be matched with
a particular person to provide health care, each
province and territory must have a system of
personal identifiers. Without such identifiers,
the record of one person could be confused with
that of another, with potentially serious consequences for the health of both. Such identifiers
already exist in most provinces and territories.
Some jurisdictions have proposed or put in place
multipurpose identifiers to cover all of a person’s
dealings with government or, for example,
transactions related to health and social services.
The Council is strongly opposed to multipurpose
identifiers and believes that they can lead to
serious invasions of privacy. Such multipurpose
identifiers make it too easy for government
officials in one agency (e.g. the tax department
or a publicly funded business development
bank) to gain access to an individual’s personal
health records or combine records from several
different areas to assemble a comprehensive
profile. In our view, every Canadian jurisdication
should have legislative safeguards against the
use of identifiers for multiple purposes.
Paths to Better Health
Better Security
While technology is obviously not a cure-all and
must be supplemented by privacy legislation
and other measures, it can improve the level of
protection of personal health information. A key
element in the technological framework for electronic health records must be a capability to
make full use of the modern technologies of
encryption and authentication. Technologies to
certify the identity of a person giving consent to
the release of personal health information, as
well as authenticating the validity of that consent,
should be used by provincial and territorial
health care systems at all levels. This same technology should be used to provide individuals
with better control over their own health information. It should also be used to ensure that
different health care providers receive only the
portion of the health record relevant to their
specialization and responsibility.
Health Canada is a full participant in the federal
government’s efforts to develop a public key
infrastructure by early 1999. The new system
lays out policies and processes for the secure
transfer of health information. It will contain an
encryption component to address privacy and
access control, and allow digital signatures.
Encryption involves the coding of information
to ensure its security. In combination with an
access key controlled by the patient, it can significantly enhance privacy protection by ensuring
that only authorized persons can have access.
Encryption is also used in telecommunications
to ensure that only the person to whom a
message is sent can read it.
Security systems can now potentially prevent
access entirely to electronic information systems.
They can also allow different people different
levels of access to the same information at different times. The explicitness, versatility and
automatic nature of such security systems have
obvious applications in provincial and territorial
health infostructures, where different health care
providers may require different levels of access to
the personal information. Such preciseness can be
programmed into an electronic security system.
The technology also allows a log to be created
electronically of all people who access a given
record. Printouts of the record and the eventual
destinations of the printout in files or charts can
be tracked. Patients can have access to this electronic log book of accesses to their records and
what happens to printouts of that record.
However, health information systems can be
complicated and costly. They also must function
in an increasingly complex environment. System
designers and stakeholders should therefore
work together to anticipate potential problems
and reactions before installing or modifying
systems. All such projects should be subject to
privacy impact assessments which take into
account not only technical and legal dimensions,
but also social, human and ethical issues.
“The arguments for a move toward an electronic record
are compelling. Such records are more likely to be legible,
accurate, safe, secure and available when required, and
they can be more readily and rapidly retrieved and communicated. They better integrate the latest information
about a patient’s care, for example from different ‘departmental’ clinical systems in a hospital. In addition, they can
be more readily analysed for audit, research and quality
assurance purposes.”
Information for Health:
An Information Strategy for
the Modern National Health Service
London, England, September 1998
Although privacy enhancement, encryption and
electronic security systems can improve protection
of personal health information, they will not do
their job if the people responsible for preserving
the confidentiality of the information do not
follow fair information practices. These in turn
must be supported by responsible security procedures and practices, including the need to
audit all accesses to personal health information.
Institutions must develop internal practices and
procedures, including self-audit procedures, for
implementing privacy protection. The Council
cannot overemphasize the need for all organizations with access to personal health information
to implement such practices and procedures. As
well, every Canadian jurisdiction should have in
place an independent oversight body to evaluate compliance with fair information practices
and legislative requirements.
Canada Health Infoway
Paths to Better Health
3-7
Stringent security systems and practices should
be in place at all levels of provincial and territorial
health care systems and any other sites where
health information actually linked or potentially
linkable to individuals can be found. Access to
this information should be audited. All such
sites, whether their purpose is health care or
research, should be subject to security audits.
These audits should include periodic site inspections to ensure that the appropriate security
arrangements and fair information practices
have been fully implemented.
Degrees of Identifiability
In the Council’s view, person-specific information
in provincial and territorial health administrative
systems should – in the context of effective
privacy legislation and stringent security
safeguards – provide a basis for creating the
information resources for accountability and
continuous feedback on factors affecting the health
of Canadians. The benefits of creating such
information resources, and the gaps they are
intended to fill, are described in the next chapter.
In most cases, data used to create these information resources are anonymized. However, it is
important to understand that there are degrees
of identifiability, depending on the process used
to remove identifers.
According to a submission from the Information
and Privacy Commissioner of Ontario commenting on the Council’s interim report, “At one end
of the spectrum, data are completely anonymous
and not linked to any identifiers. This is the least
sensitive type of health information. However,
depending on how the anonymization process is
carried out, there can be some degree of risk of
re-identification of anonymized data through
processes such as data matching or the reporting
of results of analyses using small cells. Next on
the spectrum, you have anonymous data linked
to pseudo-identifiers, not to those corresponding
to any real individual. From a privacy perspective,
depending on how the pseudo-identities are
created and implemented, this type of data may
be viewed as being equivalent, in terms of its
level of sensitivity, to completely anonymous
data. Next on the spectrum, there is code-linked
health information. This is information where
the identifiers have been replaced with a code
that, when necessary to do so, can be linked to
information that would reveal the identities of
the individuals. From a privacy perspective,
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Canada Health Infoway
depending on how the codes used to re-identify
the data are created and controlled, this information is somewhat more sensitive than completely
anonymous data or anonymous data linked to
pseudo-identities. At the other end of the spectrum, there is completely identifiable health
information. This is the most sensitive type of
health information from a privacy perspective,
with the greatest risks associated with it.”
In the Council’s view, it will not be enough to
assume all identifiers of individuals have been
erased before data are made available. A formal,
transparent and explicit process should be put
in place to review the degree to which a specific
set of data can be defined as linkable to identifiable individuals. If such identification is possible,
the more stringent requirements described
below would have to be met before any research
or other use of the data could be allowed.
Independent Ethical Review
In some cases, researchers may require data sets
linked to personal identifiers or those with a
higher level of potential identifiability. In these
circumstances, the general rule should be that
informed consent and stringent assurances about
privacy protection and security arrangements
are necessary before a researcher can have
access to personally identifiable information.
Sometimes, such as when the nature of a
research project is not known when data are
being collected, it will be impractical to obtain
consent from patients. At that time, the Council
believes notice should be given about possible
research use of the data in anonymous form. If
this is not possible, notice should be given about
possible research use of the data in personally
identifiable form, following an independent
ethical review. If the data can be linked to an
identifiable person, we believe that the burden
of proof should be on anyone proposing use of
such information without consent to demonstrate that: (a) a tangible public good of significant
benefit will result, (b) consent is impossible to
secure at a reasonable cost, (c) less identifiable
data will not serve the same purpose, and
(d) no harm can occur to any person directly
or indirectly as a result of this use of his or her
personal information.
Paths to Better Health
The Council believes that a transparent and
explicit process should be put in place to weigh,
on a case-by-case basis and according to recognized criteria, whether or not the public good
resulting from a proposed research project is of
sufficient importance and value to justify the
proposed use of actually or potentially identifiable
health information without consent. If justifiable
and depending upon the degree to which the
data can be linked to individuals, then the
researchers should be placed under binding
obligations. These obligations would ensure
compliance with requirements for confidentiality,
security and the destruction of actual or potential
personal identifiers after a specific period of
time. They would also ensure that no harm
comes to any person as a result of this use of
personal information.
The Council is aware that provinces and territories
take different approaches to conducting such
independent ethical reviews. In some provinces,
commissioners responsible for privacy and
access to information can play a role in such
reviews. In other jurisdictions, ethical review
panels at universities perform this function.
Within a single jurisdiction, multiple approaches
to ethical review may exist.
The Council has no desire to impose a single or
federal solution on anyone and regards these
different approaches as a strength in some ways.
However, we do believe that there is a need for
more transparency, greater coherence and more
harmonization in the approaches taken to conducting such independent ethical reviews. It will
be important to have a certain minimum level of
consistency and integrity in the performance of
such reviews. Also, it would be particularly
helpful to harmonize the current multiple ethical
reviews required for multiprovincial or panCanadian studies. To these ends, federal,
provincial and territorial governments should
work together closely on these matters and consider establishing an independent oversight
mechanism to ensure that ethical review panels
across the country operate consistently according
to the principles in the report. As an alternative
to, or as well as, establishing an independent
oversight mechanism, governments could create
in their respective jurisdictions ethical review
panels that would operate according to those
principles. All such mechanisms and panels
should operate at arm’s length from governments.
It is important to emphasize here that the
Council opposes real-time electronic access for
research purposes to personally identifiable
information in provincial and territorial health
administration systems. At times, it may be
desirable to create pan-Canadian data sets.
However, these would generally be made available only in relatively non-identifiable form,
with consent or under the very narrowly
defined circumstances already described.
Indeed, the general rule for all research projects
should be to provide, under the conditions
described above, data with the minimum level
of identifiability for the purpose in question.
Other Requirements
For health care purposes, the requirement will
be very different. In emergencies, particularly
when people are visiting another province or
territory, people may want to allow a physician
or health care professional or provider in that
province or territory to have access to their
records. For such access to be possible, it will be
critical for provincial and territorial health information systems to have system architectures
that make it possible to exchange information
under these strictly controlled circumstances,
with full privacy protection and security.
The Centre hospitalier ambulatoire de la région de Laval
(Laval region ambulatory care hospital) is a demonstration
site chosen by the Régie d’assurance médicale du Québec
(RAMQ) for deployment of the health card system. The
patient index and minimum clinical file of the regional
program will be used as prototypes for an eventual
Quebec system. This project will also enable use of the
health card (both that of the citizen and that of the professional) in clinics and in the home. The project has two
phases. The first, planned for fall 1998, involves delivery
of the essential components – the health card system, the
patient index and the minimum clinical file. The second,
planned for summer 1999, will involve delivery of a
case-monitoring system (individual care plan).
Canada Health Infoway
Paths to Better Health
3-9
(d) ensure a transparent and harmonized
approach across the country, in light of
the principles enunciated in the report,
to the conduct of ethical reviews on a
case-by-case basis of proposed health
research projects which require access to
individually identifiable records and
which, for whatever reason, cannot be
conducted on the basis of informed
consent by patients. (Such ethical
reviews should assess whether there is a
sufficiently substantive public good
expected as a result of a proposed project
to warrant the project and the implied
invasion of privacy.) To these ends,
federal, provincial and territorial
governments should consider:
As the Council recommended in its interim report,
provincial and territorial legislative frameworks
should be harmonized to facilitate the privacy
safeguards, security arrangements and information uses described above. Different jurisdictions
now take different approaches to the protection
of personal health information. We wish to
emphasize that harmonization should not aim at
some lowest common denominator with respect
to privacy, but toward full, effective and
enforceable privacy protection. Any jurisdiction
falling behind in its legislative safeguards for
privacy in the health area should not expect to
benefit from exchanges of personal health information among jurisdictions, even for health
care purposes.
Recommendation
(i) establishing an independent oversight
mechanism to ensure that ethical
review panels across the country
operate in a manner consistent with
the principles enunciated in this
report; and/or
3.4 Patient-based health records are a fundamental cornerstone of provincial and territorial
health infostructures. However, they have
the potential for serious violations of privacy.
The Council believes that, with particular
care, electronic health records can actually
enhance privacy protection, improve
patient care, empower citizens through
greater control of their own health records
and serve as the foundation for an everimproving information and evidence-based
health system. Consequently, the federal
Minister of Health should work with his
provincial and territorial counterparts to
bring about developments relating to
provincial and territorial health systems
that will:
(a) improve patient care by creating provincial
and territorial person-based, electronic
health record systems. These will make
accessible, on a need-to-know basis and
under the control of patients, all relevant
information about their past medical
histories, including conditions and diagnoses, as well as treatments, medications
and other forms of intervention (whether
publicly or privately funded);
(b) provide legislative safeguards against
the use of identifiers for multiple purposes;
(c) improve the security of health records by
exploiting modern technologies such as
encryption, authentication and electronic
logging of all accesses made to a personal
record;
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Canada Health Infoway
(ii) creating, if necessary in their respective
jurisdictions, ethical review panels
which would operate in accordance
with those principles;
(e) ensure that the evolving provincial and
territorial health information systems
have a system architecture that makes it
possible to exchange information under
strictly controlled circumstances; and
(f) harmonize provincial and territorial
privacy legislation to ensure that these
objectives are facilitated.
Electronic health records have the potential to
give patients access to their own health records.
They may also provide far greater control over
who has access to those records and how they
may be used. However, the technology may be
unfamiliar to many Canadians. Many others
may not fully know how to exercise their rights
to access their own information or to control
who has access to that information and how it
may be used. In the Council’s view, health care
professionals and providers, as well as federal,
provincial and territorial ministries of health,
will need to clarify these issues for the public.
Paths to Better Health
Telehealth – a scenario for the near future
Recommendation
3.5 Health care professionals and providers and
federal, provincial and territorial health
ministries should engage the public in discussions on the value and use of electronic
health records.
Jenny, 10, hurt her neck in gym class and was taken to her
local hospital in a rural community. Rather than transfer
her by ambulance to a larger hospital a few hours away,
her doctor used the telehealth network that connects all of
the province’s hospitals. The radiologist at the larger hospital
examined Jenny’s x-rays using video conferencing and
medical devices that allow for Jenny’s x-ray images to be
transmitted between doctors and hospitals. Upon examining
Jenny’s x-ray, the radiologist at the larger hospital in
discussions with the local doctor determined Jenny’s
injuries were not serious and she did not have to leave
her community for follow-up.
Seizing the Telehealth
Opportunity
Telehealth involves using information and
communications technologies to deliver health
information, services and expertise over short
and long distances.5 Its implications are farreaching. It can make a fundamental contribution
to improvements in the quality, accessibility and
efficiency of health care services.
For example, telehealth can help link the many
services in today’s complex health system into
an integrated whole. It can also ensure that
services operate in a fully coordinated fashion.
Such links are critical to ensuring that the varied
programs and services in geographically separated sites of merged hospitals or the new
institutes, community-based facilities and home
care providers work efficiently together in the
interest of patients.
Telehealth can also allow the health care system
to deliver better quality services electronically to
previously underserviced rural and remote areas
and help local providers to deliver better care.
Telehealth can enable remote areas to benefit
from expertise and skill located in urban centres,
resulting in significant improvements in the
quality, cost-effectiveness and accessibility of
health care services across Canada. Subsets of
telehealth, such as tele-homecare, can take
health care into the home, responding to the
growing demand for community-based care as
the population ages.
For example, governments have invested in
short-term pilot projects to support telehealth.
However, according to the newly established
Canadian Society for Telehealth, “The advancement of care delivery service innovations to operational levels across Canada... will require more
than technology ‘application’ and an assortment
of locally successful pilot projects. A strategy for
successful transition must involve specific
investments to address two important challenges. The first is sustainability, with the goal
of integrating the successful projects into the
regional health service frameworks as
established and self-renewing. The second is
generalizability, with the goal of transferring
innovation and evaluation knowledge across
jurisdictions and increasing the scale of services
to a population level.” To determine the
specifics of such a strategy, the Society called
for the establishment of a task force to create a
pan-Canadian strategy for telehealth. The
Council agrees fully on the need for federal,
provincial and territorial governments to
cooperate in creating such a task force.
However, there are several barriers to deploying
telehealth applications and integrating them
into the health care system across the country.
5
The definition is from Jocelyne Picot, The Telehealth
Industry in Canada: Part I – Overview and Prospects
(Industry Canada: November 1997).
Canada Health Infoway
Paths to Better Health
3-11
Tele-homecare for elderly widower –
a scenario for the near future
Despite a serious heart condition, widower Barry, 72,
stays in his home and community. He does not need to
move into a long-term care facility for several reasons.
He has close friends and relatives nearby. He receives a
variety of homecare services, including meal preparation
and housekeeping. A nurse visits him several times a week
to check his condition. And last but not least, on nights
and weekends, a tele-homecare nurse practitioner is able
to monitor his condition electronically and to phone him
with reassurance or advice as needed. Should his condition
suddenly present some danger, both Barry and the telehomecare nurse are instantly alerted. In an actual emergency, the nearest ambulance service is also alerted.
Recommendation
3.6 Federal, provincial and territorial Ministers
of Health should promote the development
of a Canadian strategy for telehealth by
establishing a telehealth task force. This
task force should be composed of representatives of health care professionals and
providers and the full array of health stakeholders, including the general public. The
mandate of the telehealth task force should
be to:
(a) develop a Canadian strategy for funding
and the integration of telehealth into
health care delivery;
The Council does not believe that work on
telehealth should halt while the task force is
developing a Canadian strategy. Practical work
to assess the needs of health care professionals,
providers and institutions for telehealth applications, to undertake telehealth pilot and demonstration projects, and to support the training of
health care professionals and providers can only
add to the knowledge base of the task force. It
will also strengthen the foundations for a
national strategy. Organizations already active
in the telehealth area, such as the Canadian
Network for the Advancement of Research,
Industry and Education, the Canadian Society
for Telehealth and the Canadian Institute for
Health Information, should also be encouraged
to continue their work.
Work must also continue on illuminating the
many ethical, legal and social issues surrounding
telehealth, especially those related to shifts in
responsibilities and expectations among professionals, institutions and the general public.
In the Council’s view, this work should be central
to the mission of Health Canada’s Office of Health
and the Information Highway.
Recommendation
3.7 To create a knowledge base for the telehealth
task force and subject to evaluation by that
task force, sufficient funding should be
allocated to Health Canada to:
(b) develop technical and professional
standards; and
(c) address issues regarding licensure,
liability and reimbursement of health
care professionals and providers.
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Canada Health Infoway
Paths to Better Health
(a) develop, in partnership with provincial
and territorial health ministries and
associations of health care institutions
and health professionals and providers,
broadly accepted frameworks to assess
the value of telehealth applications to
physicians, health care professionals,
providers and institutions, as well as
the needs of these groups for such
applications;
(b) undertake, in partnership with provincial and territorial health ministries and
associations of health care professionals,
providers and institutions, pilot and
demonstration telehealth projects as a
means of:
(i) evaluating within broadly accepted
frameworks the costs and effectiveness
of different applications and sets of
applications, and
(ii) defining best practices;
(c) support national organizations
(Canadian Society for Telehealth,
Canadian Institute for Health Information,
Canadian Network for the Advancement
of Research, Industry and Education,
and others) in their efforts to develop
and implement the national telehealth
strategy;
(d) support training for health care professionals and providers so that they can
fully exploit the potential of telehealth;
and
(e) support research, in conjunction with
key stakeholders and the general public,
on ethical, legal and social issues
associated with telehealth.
Providing telehealth services across jurisdictional
boundaries can raise complex issues because
jurisdictions have different legislation, regulations
and professional requirements governing delivery
of health care. As well, when services are provided
across jurisdictional boundaries, how will health
care professionals and providers be reimbursed? If
something goes wrong, who will be accountable?
For example, it may be necessary to allow the
cross-jurisdictional licensing of professionals.
The difficulty is that different jurisdictions have
different rules. These rules generally make no
regulatory provision for professionals or
providers from other jurisdictions. These barriers
can also exist between jurisdictions within a
single province or territory, as well as among
provinces and territories. However, several
professional associations are examining these
issues, and it is important that this effort be
strengthened and that the telehealth task force
work closely with them.
Recommendation
3.8 To build a sound foundation for a Canadian
telehealth strategy and to address the basic
issues of cross-jurisdictional licensure,
reimbursement and liability, it is vital that:
(a) professional licensing authorities develop
a mechanism of licensure that will allow
interprovincial telehealth consultations;
(b) each provincial and territorial government
develop, and coordinate through the
Federal/Provincial/Territorial Advisory
Committee on Health Services, a telehealth reimbursement policy that includes
interprovincial payment agreements for
negotiated services, recognizing that:
(i) telehealth services are a legitimate
way to deliver health care,
(ii) practitioners providing these services should be compensated, and
(iii) reimbursement for services are
currently limited to face-to-face
encounters; and
(c) providers of liability protection, such as
the Canadian Medical Protective
Association and the Canadian Nurses
Protective Society, develop appropriate
liability protection products for medical
practitioners providing telehealth services.
Canada Health Infoway
Paths to Better Health
3-13
chapter four
Creating Information
Resources
I
nformation will be a basic foundation of the
Canada Health Infoway. Such information
must be wisely and strategically used and made
available in a way fully respecting individual
privacy. It can also help improve the health of
Canadians by ensuring that our health system
continues to improve and becomes more
accountable to Canadians. The benefits flowing
from such strategic uses of information are farreaching, as shown below. However, there are
serious gaps and flaws in the information now
available. These must be filled if the full benefits
of the Canada Health Infoway are to be realized.
It will be critical to ensure that privacy protection
is an integral part of our efforts to fill these gaps.
The Canadian Institute for Health Information
(CIHI), Statistics Canada and Health Canada, on
behalf of the Council, have created a Health
Information Roadmap which takes a promising
approach to filling these gaps. This action plan
also addresses the key issue of accountability to
the public through report cards on the health
care system.
The Need for Strategic
Information Resources
As stated in the Council’s interim report, the
Canada Health Infoway should enable creation
of strategic information resources. These resources
should address everything from costs of health
services and medical interventions to their
impacts on health, or the influence of nonmedical determinants of health. These new
information resources should be the basis for a
new accountability throughout the health sector.
This information should also provide the basis
for continuous improvement in the quality of
health care by providing continuous feedback
on the health impacts of medical interventions
and health policies, programs and services. Such
new information resources should be designed
with a clear customer focus.
We have large gaps in our understanding of the
factors affecting individuals’ health over the
medium to long term. For example, what is the
longer-term effectiveness of sometimes competing
procedures or interventions – such as coronary
bypass surgery and balloon angioplasty? In the
case of prostate cancer, what are the relative
merits of drug therapy, surgery, or simply
waiting and seeing? How do psychological
interventions affect outcomes? What are the
special health risks of different occupations?
What are the long-term effects of many environmental hazards? To what degree, if at all, do
people with low incomes or educational levels
benefit from “equal access” provisions in the
Canada Health Act? The Canada Health Infoway
should allow all stakeholders, and researchers in
particular, to answer these questions and many
others, then pass the answers on to health care
professionals and providers in accessible and
usable form. Such new data on health determinants and the outcomes of health care
interventions has the potential, not just to
improve health care in Canada, but to
revolutionize it.
Canada Health Infoway
Paths to Better Health
4-1
At present, no one in Canada can break down
the costs of specific health interventions so that
they are comparable across provinces and different kinds of health care providers. We also do not
have a clear sense of the costs or effectiveness of
services outside hospitals and doctors’ offices –
in clinics, long-term care facilities, laboratories
and home care. The Canada Health Infoway
should allow all health stakeholders – and
health managers in particular – without their
having access to personally identifiable health
information, to achieve a much more detailed
and comprehensive picture of costs and thus
improve management and cost-effectiveness
within the health sector. More important, such
information represents a key foundation for
better coordination and even integration of
services across the spectrum of care.
Health policymakers do not have sufficient
access to evidence-based information on the
costs and outcomes of different policies or their
potential impacts on the health of large populations. The systems for collecting data that would
allow a true evaluation of many health reforms –
such as hospital restructuring or the closing of
hospital beds – also do not exist. Data on community-based institutions and home care services
which are to provide services in lieu of hospital
beds remain scarce across Canada. The Canada
Health Infoway would enable the creation and
analysis of information on the costs and health
impacts of existing policies across the entire
spectrum of care. It would also enable implications of other policy approaches to be projected.
This continuing evidence-based feedback on
policy will allow more effective decision making.
It would also be available to the public as a
basis for accountability.
Problems with Existing
Information
Throughout the consultation and from the
results of recent opinion surveys, the Council
found that Canadians are increasingly concerned
about how well their health care system is
meeting their needs. They worry about the ability
of the system to continue to provide universal
access to comprehensive care when and where it
is needed.
The changes taking place in the health care
system – regionalization, hospital restructuring,
shifts toward community-based care – may be
unsettling to those accustomed to how care used
to be delivered. But is there good evidence to
show that these reforms are a step in the right
direction? Conflicting reports about the state of
the health care system are common. Some claim
the system is in crisis. Others insist that we still
have one of the best in the world. Who is right,
and who should be believed?
We want more information about how the
health care system is functioning, and whether
we are allocating our health care dollars in ways
that produce the greatest health gains. Canadians
want an accountable health system. Health care
providers, managers and others who work within
the system have also expressed the need for
better information. They want to know if they
are providing the best possible quality of care,
if they are using resources appropriately, and if
they are improving the health of the people
they serve.
Canadians are also interested in knowing how to
improve their health, and how to prevent disease.
The health care system is a major contributor,
but the public recognizes that there are many
factors beyond the health care system influencing
their health. The bottom line is that Canadians
want to know about their health, and whether it
is improving over time.
In early 1998, CIHI, Statistics Canada and the
Council joined forces to consult with more than
500 Canadians representing health care professionals, providers and users to identify evolving
health information needs and priorities.
4-2
Canada Health Infoway
Paths to Better Health
Canada’s various health information systems
now suffer from the following problems:
• Data are fragmented – Our data tend to be
divided into silos – for example, one for
hospitals, one for physician services, one for
financial data. This is because we have tended
to allocate budgets by creating separate funds
for different providers. Many provinces have
changed this approach and now use integrated
delivery models that emphasize a seamless
continuum of care and funding based on the
population served. However, the organization
of data has not kept up with the evolution of
the newer health care delivery models. The
result of this fragmentation is that we have
trouble presenting a complete picture of the care
that Canadians receive and how it compares
over time or in different areas. Moreover, the
data we do have on health status and on
health determinants remain unconnected to
data on health care services.
• Data are incomplete – We have good data on
some services such as hospitalizations, but
little data in other areas such as home care or
preventive services. Our data on the resources
used to provide services (e.g. health professionals, technology) and the cost of each service are
patchy at best. As the Alberta Association of
Registered Nurses emphasized in its comments on our interim report, “The absence of
nursing components of health information
means that for all our documentation on current patient and client health records, no permanent evidence of nursing’s interventions
and their effects on client outcomes currently
exists on provincial or national health information databases.” We have almost no data
on the health impacts of present health policies
or the services provided to patients. Data
compiled by private health care providers
also are not always captured for policy
development and health program evaluation.
• Data are not analysed to the fullest extent –
While extensive data exist on the various nonmedical determinants of health, they are not
always available in a standardized way. Also,
these data are not being used to their full
potential for analysing variations of trends in
population health status. Data become useful
to health care consumers and planners only
when they are analysed. By analysis, we
mean the identification of trends, variations
and associations between different events.
For example, we might want to know whether
certain policies or programs were related to or
resulted in improvements to health.
• The results of research are not consistently
reaching Canadians – This failure is partly
because there is no coordinated approach to
providing information to Canadians about
how to improve health and the health care
system. As a result, information does not
always reach its intended audience in a form
that is accessible and easy to use. This issue is
addressed in Chapters 2 and 3, as well as here.
The demand for health information is greater
than ever. Technological advances have greatly
reduced the costs of creating and maintaining a
sophisticated health information system. The
federal government and provinces have also
embarked on major initiatives to improve the
state of health information in their own jurisdictions (e.g. Alberta We//net).
What is now needed is a coordinated plan of
action. No single government or organization
can deal with the above problems alone.
Cooperation at all levels – national, provincial,
territorial, regional and local health organizations – is necessary for success.
• Data cannot be shared easily – Our health
systems do not always allow us to share or
exchange data easily, even with completely
anonymized or statistical data, let alone
personal health information that has full
privacy protection.
Canada Health Infoway
Paths to Better Health
4-3
Key Questions – Key
Answers
Health information systems in the Canada
Health Infoway should provide information to
answer two crucial questions:
• How healthy is the health care system?
• How healthy are Canadians?
The first covers the effectiveness, efficiency and
responsiveness of the health care system.
Generally, this type of health care system is one
that offers the quality of care Canadians expect.
• Effectiveness considers whether or not we are
doing things that improve the health of
Canadians. Effectiveness is an essential
component of what many providers and consumers describe as quality care. More simply,
effectiveness asks the question: What works
and what does not? The answer lies in our
ability to measure what we are doing – whether
it be health programs, policies or individual
clinical decisions made by health care professionals and providers with their patients.
Then, we must be able to measure the impact
of our actions. What is the
outcome of our interventions?
“If we can identify groups in
Did we prevent a death, an
illness, reduce disability, or
Canada with poor health, we can
improve quality of life?
direct special attention to those
groups most in need. If we know
what works and what does not,
we can save health care resources....
If we identify “best practices,” we
can share that information with
other providers.... If we have
information on responsiveness,
we can encourage those who are
managing the system to pay
attention to the identified needs.
• Efficiency explores whether
we are getting value for
money. Are we using the
right amount of resources to
achieve a desired result?
Related to this question is
the issue of cost-effectiveness. How do different
interventions to treat the
same condition compare
with benefits and costs?
Is one or the other more
reasonable in this balance
between benefits and costs?
Is there a better place to
spend the money?
And finally, if we have information
on trends,...we can assess our
overall progress.”
4-4
Canada Health Infoway
• Responsiveness addresses how well the system
is meeting the needs of the public, and is
another aspect of quality of care. We may be
doing things that work, and doing them
efficiently, but the system may still not be
meeting our needs. Are people satisfied with
the care they receive? Do they have adequate
access to services? How extensive are the
waiting lists for necessary procedures? Are
we maximizing our use of the most efficient
and effective interventions?
The second question is broader, and addresses
the basic objectives of the system: Is the health
of Canadians improving? How does health status
differ as a result of non-medical determinants of
health, such as gender, ethnicity, socio-economic
status and where Canadians live? How have
improvements in health varied across groups?
How do things outside the health care system,
such as employment and working conditions,
nutrition and housing affect our health? How
important has the social environment, including
community and family supports, been in
sustaining our health? What about the physical
environment and lifestyle risk factors?
We need to know how well our health care system
is improving health. But we also need to know
how modern medicine affects health, compared
to other non-medical determinants of health.
Addressing these non-medical determinants
may lead us to further gains in health and
reductions in health inequalities, which cannot
be achieved by the health care system alone.
The ability to answer all of these questions
allows the public, health service providers and
planners to make better informed decisions. If
we can identify groups in Canada with poor
health, we can direct special attention to those
groups most in need. If we know what works
and what does not, we can save health care
resources by eliminating ineffective interventions
and expanding effective ones. If we identify
“best practices,” we can share that information
with other providers and improve quality of
care. If we have information on responsiveness,
we can encourage those who are managing the
system to pay attention to the identified needs.
And finally, if we have information on trends
and the distribution of health status among
Canadians, we can assess our overall progress.
This is a critical step for strengthening accountability within our Canadian health care system.
Paths to Better Health
The report Health Information Roadmap:
Responding to Needs is designed to provide the
information needed to address all these issues.
Privacy Protection as a
Design Feature
Privacy is a fundamental value in Canadian
society. Individuals have important rights over
when and how their personal information is
used. Those who handle individuals’ health
data must maintain the highest standards of
confidentiality. They have an obligation to keep
secret the personal information entrusted to
them. Our data systems must also be secure.
There must be technical standards in place to
ensure that unauthorized persons cannot access
confidential data.
These values and principles must be at the
forefront of any health information system
development. They must be considered at each
stage of the process – from database design and
data collection to analysis and dissemination of
results. Without this basic respect for the privacy
of individuals’ health data, the public will lose
confidence in the health information system.
One important means to achieve this objective is
for members of the public to have transparent
access to the privacy, confidentiality and security
policies and procedures. They must also have
information on how their health data are used.
Health information is used in different ways. The
most important is in the treatment of a specific
patient, where the person’s identity is essential.
The use we are concerned with here is statistical,
in a search for patterns and trends. This latter
analytical use generally requires person-based
data but not people’s names. However, it too
raises concerns about privacy. These concerns
have traditionally been seen as a tradeoff against
data access for research and analysis in the public
interest. A more positive way of viewing privacy
is with the attitude that the best way for analysts
to maintain the public’s consent to use sensitive
(but anonymous) health data is to show the
public that privacy, confidentiality and security
are being taken very seriously.
Chapters 3 and 5 address this issue. The Health
Information Roadmap: Responding to Needs, the
report containing the high-level action plan
developed by CIHI, Statistics Canada and
Health Canada, provides for privacy protection,
confidentiality obligations and data security in
each of its elements.
The Health Information
Roadmap – An Action Plan
for the 21st Century
The Health Information Roadmap foresees a strong
health information system which is:
• secure and respects Canadians’ privacy,
• consistent,
• relevant,
• integrative,
• flexible, and
• user-friendly and accessible.
Across the country, many initiatives are under
way to address health information needs. Health
care providers, regional health authorities,
provincial and territorial governments, and
many others are investing in improving health
information. While these initiatives are important,
they are not enough for building a pan-Canadian
health information system. The action steps
below describe what must be done to move
from the data gaps described above to information solutions which will strengthen health care,
improve the health of Canadians and enhance
accountability throughout the Canadian health
system:
• Integrative, consistent data – To move away
from the present fragmented approach to
data, it will be necessary – in the context of
stringent privacy safeguards, confidentiality
requirements and data security arrangements –
to develop common standards for data and
person-oriented (as opposed to incident-based)
information in provincial and territorial
health information systems.
Canada Health Infoway
Paths to Better Health
4-5
• Linking health determinants, interventions
and outcomes – The present provincial and
territorial health records allow the study of
health interventions, but these represent only
some of the determinants of health status.
Others include lifestyle, occupation, environmental factors, etc. Present data also do not
permit assessing the effect of interventions on
long-term health outcomes, particularly in a
regional context. To remedy these shortcomings,
it is proposed to greatly expand the scope and
sample size of the National Population Health
Survey.
• Relevant, flexible data – To end dependence
on incomplete data, it will be necessary – in the
context of stringent safeguards, confidentiality
requirements and data security arrangements –
to develop on an ongoing basis new or
expanded data on health services and the
costs of services, purge all deaths from
provincial and territorial records, and integrate survey data on outcomes with survey
data on interventions, health determinants
and health status.
• Sharing of data – To eliminate unnecessary
barriers to the sharing of data, it will be necessary – in the context of stringent privacy
safeguards, confidentiality requirements and
data security arrangements – to develop information exchange protocols that will allow the
sharing of data under the appropriate conditions (as spelled out in the section on privacy).
• User-friendly and accessible data – To end
situations where data are not analysed fully
or the results of that analysis do not reach
Canadians, it will be necessary – in the context
of stringent privacy safeguards, confidentiality
requirements and data security arrangements –
to expand Canada’s ability to analyse health
data and disseminate the results by:
-
4-6
building up a Canadian capability for
the analysis of health data to document
better the health status of diverse populations within Canada and describe the
determinants of health from a non-medical
perspective;
-
developing measures of health system
performance and report cards aimed at
the public; and
-
disseminating the results of analysis in a
form more accessible to users.
Canada Health Infoway
In the Council’s view, Health Information Roadmap:
Responding to Needs provides a plan for creating
the strategic information resources called for in
the Council’s strategic framework. The roadmap
proposes cooperation with interested provinces
in building on their health records, suitably
extended and integrated to track health interventions over time. It would supplement this
information with cost data. It would develop and
help to incorporate common data and technical
standards. It would integrate information on
deaths and, on a sample basis, information on
health determinants and health status outcomes.
Finally, it proposes expanding the analytic
capacity needed to exploit these resources for
the benefit of all. In summary, the roadmap would
provide a flexible tool for productive studies of the
health of Canadians and of their health system.
Recommendation
4.1 The report, Health Information Roadmap:
Responding to Needs, developed by the
Canadian Institute for Health Information,
Statistics Canada and Health Canada, fully
articulates a plan for the creation of information resources to support accountability
and continuous feedback on factors affecting
the health of Canadians. The federal Minister
of Health should commit the necessary levels
of funding (as detailed in the report) to
ensure – in the context of stringent privacy
safeguards, confidentiality requirements
and data security arrangements – successful
implementation of the plan.
The Council believes that the roadmap’s plans for
modernizing Canada’s health information system
must be implemented at a realistic pace. It will
be necessary to establish collaborative partnerships and foster an environment for cooperation
in these efforts. Balancing urgency and ambition
with practicality, the roadmap suggests a phased
strategy with both short- and medium-term
deliverables, while taking into consideration the
availability of financial resources and people’s
capabilities to carry out these projects.
It is important to note that the health information
system as presented in the Health Information
Roadmap will increasingly mirror the integrated
health care system that is developing in Canada.
The traditional “silo” thinking will be replaced
with broader perspectives on the continuum of
care. Fostering this change in perspective is
essential to moving this system forward.
Paths to Better Health
It is urgent that we move down these roads
quickly. Canada’s health care system has suffered
from a lack of information for too long. Managing
an enterprise that accounts for 10% of the economy
and 30% of provincial and territorial budgets
without good information is like flying a jumbo
jet without an instrument panel.
Report Cards on the Health
Care System
A key product of the analysis required to produce
accessible and user-friendly data will be evaluations to tell Canadians how the system scores on
the criteria of effectiveness, efficiency and
responsiveness mentioned above. Such evaluations could provide a true basis for system
accountability. Some provincial agencies have
already published system-wide and sectoral
performance profiles.
To carry forward this aspect of the roadmap, it will
be necessary to work with provincial governments
and partners across Canada to obtain a consensus
on precisely what data are needed to provide a
fair evaluation of the health system and ensure
accountability. These endeavours will evolve
over time, based on available data and the
changing consensus on how to assess health
system performance.
For example, the range of indicators that could
be used in such report cards could include:
• Health resources – The focus here might be
the size of health budgets, both in total and
broken down by public and private sector, by
federal and provincial or territorial government
as well as by region or locality, and by health
sector. Reports on the number of physicians,
nurses and other providers per capita would
be useful, particularly urban-rural comparisons.
Surveys and other tools could also be used to
determine the health care needs of communities.
• Service delivery – It might be useful to look at
waiting lists and the degree to which patients
were able to gain timely access to care within
recommended waiting times in assessing
service delivery. Another measure might be to
look at, for example, reduction in unexplained
variations between regions and institutions in
selected interventions such as hysterectomies
or ultrasounds. The degree of adherence to
evidence-based clinical practice guidelines
(e.g. those for immunization and breast
cancer screening) could also be measured.
• Outcomes – A basic measure of outcomes is
obviously avoidable readmissions to hospital
or the avoidance of adverse events related,
for example, to pharmaceuticals or the blood
system. Reductions in mortality due to
medically treatable diseases could also be
measured. Another important indicator could
be improvements in health status (ranging
from reduction in chronic illness, to effective
management of mental health disorders, to
recovery of daily functioning ability after acute
care episodes). It might also be useful to look at
degrees of improvement in pain management
and coping with chronic conditions.
• System management – Report cards on the
management of the health care system could
focus on the degree to which resources were
realigned relative to health care needs within
the population; patient-centred information
systems were used; the delivery of services
was integrated and focussed on patient needs;
communication took place among health care
professionals and providers; and management
tools for planning and measuring utilization of
services were used across the spectrum of care.
• Patient satisfaction – Patient satisfaction
could be measured with survey and other
tools to determine how easy it was to get
access to services, how responsive those
services were to individual needs and preferences, and how competent and appropriate
the service provider’s intervention was.
An important part of these measures could be to
identify exemplary practices, which could yield
practical information on how to improve care.
As Canada becomes more sophisticated in using
and analysing person-oriented information in
the context of stringent privacy safeguards,
confidentiality requirements and data security
arrangements, it will be possible to move
toward measuring the effectiveness of specific
interventions and the efficiency of different
interventions.
Canada Health Infoway
Paths to Better Health
4-7
Recommendation
4.2 As a key element of the Health Information
Roadmap, the federal Minister of Health
should, in partnership with his federal,
provincial and territorial counterparts and
health stakeholders across Canada, support
evaluative analyses and consensus building
to develop yardsticks and fair measures of
health care system performance and the
health status of Canadians. These analyses
would form a basis for report cards to the
public that will improve the overall
accountability of the health care system.
It is likely that a significant number of outbreaks of
communicable diseases, notably food-borne illness, go
undetected in Canada each year. Improved health
surveillance – the tracking and forecasting of a health
event or determinant, the interpretation of data and the
rapid sharing of information – could reduce the number of
individuals affected by outbreaks. For example, an outbreak of food poisoning by a particular food product last
year affected 800 people across Canada. With the
development of faster communication and information
networks, it is estimated that more than 80% of these
cases could have been prevented.
Health Protection Branch, Health Canada
Need for a National Health
Surveillance Network
Three Health Canada initiatives form key parts
of the action plan: the Canadian Health
Network, the First Nations Health Information
System and the National Health Surveillance
Network. The first two are discussed in
Chapters 2 and 7, respectively, but the National
Health Surveillance Network deserves particular attention.
Surveillance of health, demographic and social
indicators is essential to our ability to manage
and improve the health system and the health of
the population. Health surveillance supports
public health and population health activities by
systematically identifying emerging issues and
monitoring the effectiveness of intervention
strategies. In addition, health surveillance
activities provide timely and relevant information
on diseases and other health risks as well as outcomes to support planning, policy development
and program changes.
At present, the creation of data for public health
surveillance usually occurs locally, in hospitals
or other institutions, in general or targeted
populations, and in individual provinces and
territories. Aggregation and further analysis
are done at the federal level by the federal
government. However, there is no planned,
coordinated, pan-Canadian health surveillance
network that enables the timely, accurate
exchange of information and knowledge which
can then be distributed across the country for
action by the public health community.
Last year, Health Canada began developing a
health surveillance infostructure, which will
eventually become the federal portion of a collaborative network of people and organizations,
each providing standard health surveillance
data (e.g. on incidents of disease, laboratory test
results) electronically as health events are
recorded. This National Health Surveillance
Network will allow the timely monitoring of the
health of a region, a province, a territory, the
nation as a whole or the world through
exchanges of information with other countries.
The network will also provide decision support
applications to help analyse data. Critical to the
success of this initiative will be the strong support
of federal, provincial and territorial health
ministers.
Recommendation
4.3 Federal, provincial and territorial Ministers
of Health should collaborate in supporting
the development of a National Health
Surveillance Network that will allow the
timely monitoring of the health of a region,
a province, a territory or the nation as a
whole in a global context.
4-8
Canada Health Infoway
Paths to Better Health
chapter five
Improving Privacy Protection
T
he Canadian Medical Association (CMA), in
its comments on our interim report, stated,
“We believe that the development of a robust
health infostructure is essential to better health
system planning and research and ultimately
better patient care. However, in developing this
structure it is important to ensure that the privacy
of patients and the physician’s duty of confidentiality is adequately safeguarded.” The Council
agrees completely. It is also convinced that the
Canada Health Infoway can and must lead to
improved privacy protection within Canada’s
health sector.
To this end, the Council considers privacy protection one of the four strategic goals for, and a
key design feature of, the Canada Health Infoway.
The three previous chapters, which focus on the
realization of other strategic goals, also contain a
discussion of privacy. Chapter 3 in particular
contains an extensive recommendation on how
to ensure the privacy of electronic health records.
To fully appreciate the Council’s position of personal privacy protection, it is necessary to read
Chapters 2 to 4.
This chapter focuses on the key mechanisms that
should be in federal, provincial and territorial
privacy protection legislation relating to health
information. As an introduction to this discussion,
we shall draw heavily on our interim report to
lay out some key privacy concepts and considerations.
We wish to thank Canada’s federal, provincial
and territorial privacy commissioners for their
comments and helpful feedback on our interim
report. Their recommendations have helped us
make privacy protection an even more pivotal
concern in our broad strategy to develop and
implement the Canada Health Infoway.
In considering the Council’s approach to privacy
in this report, it is important to consider what it
is not. We have not spelled out specific legislative
provisions or offered instructions for drafting
privacy legislation. Nor do we lay out all of the
rules and procedures that should govern the
protection of personal health information, confidentiality obligations and effective security
arrangements. Privacy is a very complex issue,
and such detail is beyond the scope of this report.
As with the other basic strategic goals for the
Canada Health Infoway, our mandate is to present
broad strategic directions, general principles
and approaches that would improve privacy
protection within Canada’s health sector. It will
be the responsibility of those who come after –
including Canada’s privacy community – to
bring about sound privacy protection.
Canada Health Infoway
Paths to Better Health
5-1
Privacy Concepts
As noted in our interim report, Canadians in
survey after survey have expressed concern
about loss of privacy in the new electronic environment and, more specifically, their control
over personal information. Few such categories
are more sensitive than personal health information. In its own consultations, the Council also
found much anxiety about this issue among
stakeholders in the health sector and representatives of the general public.
Privacy is often defined as the right to be free
from intrusion or interruption. It is linked with
other fundamental human rights such as freedom
and personal autonomy. In relation to information,
privacy involves the right of individuals to
determine when, how and to what extent they
share information about themselves with others.
Privacy can also be a concern for groups such as
Aboriginal and immigrant communities. These
communities worry that research on their
members could be released to the media without notice and used in a negative way. This
emerging issue is growing in importance and, in
the Council’s view, should be a serious consideration in the context of ethical reviews of proposed
research projects.
Safeguarding privacy for individuals includes
protecting information about oneself – that is,
any information that can be linked to a person
who can be identified. Protection of personal
information requires adherence to fair information
practices in managing such information.
Confidentiality refers to the obligations on one
person to preserve the secrecy of another’s personal information. Security refers to the procedures and systems used to restrict access and
maintain the integrity of that information.
5-2
Canada Health Infoway
As noted in our interim report, privacy, although
a fundamental value and right, is not an absolute
right in law and in Canadian society. For example,
in criminal cases or in matters affecting public
health, there are justifiable circumstances in
which privacy must be weighed against the
public good. Such balancing should never involve
considering the sacrifice of personal privacy on
a broad scale, even to achieve some overwhelming
public benefit. Rather, the consideration might
relate to a case-by-case review to assess whether
a presumed public benefit is of sufficient value
to warrant – in that case and for that purpose –
a limited intrusion of privacy with specific
restrictions and safeguards.
Key Legislative Mechanisms
Significant variations now exist in provincial
and territorial laws, regulations and guidelines
for privacy and the protection of personal health
information in the public sector. Quebec has legislation which also applies to the private sector.
The federal government also brought forward in
October 1998 legislation (Bill C-54, the Personal
Information and Electronic Documents Act) that
would apply to those parts of the private sector
under federal jurisdiction for the next three
years. Three provinces have introduced or passed
new legislation intended to protect personal
health information. However, compatible
approaches are not always taken.
In the Council’s view, as noted in its interim
report, a real danger exists that Canada could
end up with many different approaches to privacy
and the protection of personal health information.
Different approaches could make it difficult, if
not impossible, to improve the portability of
services or create information resources needed
for accountability and continuous feedback on
factors affecting the health of Canadians. In
some cases, any exchange of information might
be prohibited by law in those jurisdictions that
do not provide adequate protection for personal
health information. Refusal to share information
in such circumstances would be entirely
defensible. However, it is to be hoped that the
circumstances justifying such a refusal can be
avoided in Canada.
Paths to Better Health
For these reasons, in its interim report the
Council called on the federal Minister of Health
to take the lead in encouraging an accord
among provincial, territorial and federal governments to harmonize the approaches in their
respective jurisdictions to privacy and the protection of personal health information taking
into account best practices internationally. The
Council also recommended that all governments
in Canada should ensure that they have legislation to address privacy protection specifically
aimed at protecting personal health information
through explicit and transparent mechanisms.
Several key principles, approaches and mechanisms should be incorporated in such legislation. In depicting them, however, we are aware
that our list is not comprehensive, all-inclusive
or definitive, either here or within
Recommendation 3.4. In responding to our
interim report, the CMA drew attention to its
recent officially announced privacy code which
addresses the seriousness of the association’s
commitment to privacy. The code represents an
important contribution to the deliberations of
Canadians and legislators on how to safeguard
privacy across the health domain. In keeping
with our mandate, we have set out broad legislative directions relevant to the electronic
health infostructure without specifically endorsing a particular set of proposed codes.
It is critical that privacy protection legislation
define health information in broad terms to
include information collected by both the public
and private sectors. Obligations to protect
health information should apply equally
to both.
Such legislation should contain a clear definition
of personal health information and address the
differences in the degree to which data can be
made personally identifiable, as described in
Chapter 3.
Within the legislation, there should be a transparent definition for custodians or trustees of
personal health information – the persons
responsible for ensuring the protection, confidentiality and security of personal health information. Their obligations should be precisely
defined. They should apply equally to public
and private sector organizations, as well as to
organizations acting as an agent or contractor
for the custodian. The definitions of guardians
(e.g. for minors) and their obligations should
also be clearly set down in the legislation.
The legislation should also contain a precise
definition of free and informed consent, as well
as a statement of principle that informed consent
should be the basis for sharing personal health
information.
“Exemptions” to this requirement for informed
consent should also be clearly set out in law.
More specifically, legislative guidance should be
provided on how to balance the right of privacy
with the public good for research purposes to
implement the coherent and harmonized panCanadian system for independent, ethical review
recommended in Chapter 3. The legislation
should also contain a clear prohibition against
all secondary commercial use of personal health
information.6
Provisions regulating secondary uses of nonidentifiable health information must form part of
the legislation. Such provisions should address
privacy concerns surrounding the degree to
which such data might be linked back to an
identifiable individual, as described in Chapter 3.
To prevent such potential abuses, the legislation
should set clear limits on access to and use of
health information by third parties outside the
health care system. To prevent the serious invasions of privacy that can result from the unrestricted linking of personal health information
with other kinds of information on the same
individual, the legislation should contain provisions prohibiting the use for any another purpose
of unique personal identifiers in health information systems.
6
The need for rigorous definition of free and informed consent and a ban
on all secondary commercial use of personal health information is apparent from the following example provided by Ann Cavoukian and Don
Tapscott in their 1995 book, Who Knows: Safeguarding Your Privacy in a
Networked World: “...it may be the case that you, through little choice of
your own, have given (personal health) information to (direct marketers).
You may have been forced to consent to the release of your information
for a wide variety of purposes. We say ‘forced’ because when faced with
dire consequences, such as being denied medical insurance, you have little real choice other than to consent to what is being asked of you. This
type of consent is neither free nor informed, but is frequently obtained by
having individuals sign broad release forms that permit wide-ranging
secondary disclosures to third parties.”
Canada Health Infoway
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5-3
Finally, such legislation should include measures
to remedy breaches of privacy, including criminal
sanctions and civil law remedies.
Recommendation
5.1 In harmonizing and strengthening the
protection of personal health information
across jurisdictions, governments should
ensure that their privacy legislation for
health embodies the following mechanisms
and principles:
(a) a clear definition of health information,
broad enough to incorporate health
information collected in public and private
systems and to ensure that equal obligations and penalties apply to both public
and private sectors;
(b) a definition of personal health information,
which takes into account the spectrum of
potential identifiability in the case of
health information;
(c) a definition of a custodian or trustee of
personal health information, and a
custodian or trustee’s obligations, including provisions for ensuring that these
obligations apply equally to private
sector organizations and organizations
acting as an agent or contractor for the
custodian;
(d) definitions of a guardian (e.g. for a
minor child or a mentally incompetent
person) and of a guardian’s obligations;
(e) a definition of what constitutes informed
consent, as well as a clear statement of
principle to the effect that informed
consent should be the basis for sharing
information;
5-4
Canada Health Infoway
Paths to Better Health
(f) a precise definition of “exemptions” to
this requirement for informed consent –
specifically provisions that give clear
guidance on how to balance the right of
privacy with the public good for research
purposes;
(g) provisions prohibiting all secondary
commercial use of personal health
information;
(h) provisions setting clear limits on access
and use of health information by third
parties outside the health care system;
(i) provisions regulating secondary uses of
non-identifiable health information,
taking into account the spectrum of
potential identifiability of such
information;
(j) provisions prohibiting the use of personal
health identifiers for other purposes, to
prevent the potential serious invasions of
privacy attendant upon potential access
to personal health information beyond
the health domain or the combination of
records from several different areas to
assemble a comprehensive profile; and
(k) provision for remedies in the case of
breaches of privacy.
chapter six
Standards
A
s noted in Chapter 1, the Canada Health
Infoway will not be a single massive
structure. It will be composed of provincial and
territorial as well as federal health infostructures
and those of regional health authorities within
provinces. These are already being designed or
implemented across Canada. Each of these will
retain its identity and integrity.
The Canada Health Infoway will involve the
potential for two kinds of information transfers
among provincial and territorial health infostructures.
• First, the Health Infoway should allow for the
possibility of interprovincial transfer of a
patient’s health record for the purpose of
treating that patient and subject to his or her
control.
• Second, the Health Infoway should allow the
precisely controlled pooling of information
from provincial and territorial health records
for research purposes, under the conditions in
Recommendation 3.4 and legislative provisions
in Recommendation 5.1.
It will be necessary to achieve a significant level
of harmonization among the standards used in
provincial and territorial health information systems to ensure the possibility for such controlled
interconnections.
This chapter will look briefly at the concepts of
standards and privacy and the relationship
between them. It then moves on to a discussion
of the means available to achieve compatible
standards in a Canadian and world context.
Finally, we will examine the need to test for
compatibility among applications used in health
information systems.
Standards and Privacy
Standards are documented agreements containing
technical specifications or other criteria to be
used consistently as rules, guidelines or definitions
to ensure that materials, products, processes and
services are suitable for their purpose. Some
standards created to meet safety requirements
are enforced by law. Others establish rules
affecting how people behave and technology
operates.
The number of different kinds of standards is
enormous. In the Canada Health Infoway, they
might include technical standards for hardware
and software, data standards to ensure the
quality and comparability of data, information
exchange protocols to allow the exchange of
information, and clinical standards to ensure,
for example, that a piece of equipment or system is appropriate for a given clinical purpose.
The compatibility of standards within and
across provincial and territorial boundaries will
be critical to many of the functions performed
by the Canada Health Infoway. One major reason for striving for compatibility in standards is
to ensure that whenever information crosses
provincial and territorial boundaries – whether
for treatment or research purposes – the same
terms mean the same thing and such transfer of
information is technically possible. As Chapters
2, 3 and 4 show, it is vital for individuals,
Canada Health Infoway
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6-1
communities, physicians, health care professionals
and providers, institutions and jurisdictions to
be able to communicate with each other and
exchange information across provincial and
territorial boundaries. This exchange, of course,
would be subject – to the degree personal information is involved – to the stringent privacy
safeguards, including confidentiality requirements
and security arrangements, outlined in those
chapters. It is the Council’s view that effective
privacy protection should be a prerequisite for
the use of personal health information – within
or across provincial and territorial boundaries.
Developing and
Implementing Compatible
Standards
As the Council pointed out in its interim report,
standards emerge in many ways. Sometimes,
governments make standards mandatory when
the public interest is at stake – for example,
when health or safety or personal privacy is at
issue. Market forces can create a de facto standard when some product – such as Microsoft
Windows™ – achieves dominance.
Other standards arise through consensus building
by standards development organizations or
other kinds of associations. The process can be
slow, labour intensive and time consuming.
“...governments, professional
associations, hospitals and
community health organizations
have been building various health
information systems...under the
umbrella of provincial and
In Canada, the largest such
organization is the Canadian
Standards Association (CSA).
The CSA addresses a wide
range of industrial sectors –
including information and
communications technology –
and has sophisticated
mechanisms for consensus
building.
territorial governments. Until
In 1996, the Canadian Institute for Health
Information (CIHI) established a Partnership for
Health Informatics/Telematics to define and
adopt emerging standards. Its purpose is to ensure
the development of a set of health information
standards for Canada that are not redundant or
in conflict with other standards. The partnership
has more than 300 members from associations,
professional and provider organizations, systems
vendors and government ministries which
directly participate in and fund the standards
development process. Talks have already started
between CIHI and the CSA to explore the possibility of a standards development organization
for health information and telematics, based on
a partnership between the two organizations.
The importance of standards in health information
and telematics has been acknowledged repeatedly
at the international level. The International
Standards Organization (ISO) established in
1998 a technical committee to look at standards
in this area. Many developed countries, including
the United States, have created formal standards
development organizations that focus specifically
on health informatics and telematics with a
mandate to participate in ISO deliberations. The
Standards Council of Canada (SCC), under the
umbrella of Industry Canada, is the body that
creates standards development organizations in
Canada. The SCC asked CIHI to take a lead role
for Canada in a meeting of the ISO technical
committee this year.
In Canada, governments, professional associations, hospitals and community health
organizations have been building various health
information systems within their respective
jurisdictions. Most of this work is being carried
out under the umbrella of provincial and
territorial governments. Until recently, ensuring
that these systems are at least minimally
compatible has not received much attention.
It would also be desirable to achieve greater
participation by citizens in this process.
recently, ensuring that these
systems are...compatible has not
received much attention.”
6-2
Canada Health Infoway
Paths to Better Health
Despite much progress, Canada has a long way
to go in developing compatible standards. In its
interim report, the Council recommended that
Canada should develop a strong, Canadian
capability for cooperatively managing the development and adoption of compatible standards
in the areas of health information and telematics.
It also recommended developing strong links to
international standards deliberations. In the
Council’s view, such a strong Canadian capability
can be achieved only if CIHI receives sufficient
funding for standards development from federal,
provincial and territorial governments. Its partnership initiative should be expanded to allow
more participation by citizens in the standards
development process. Because health care is
largely publicly funded and administered, it is
also critical that CIHI have a formal process for
identifying, ratifying and implementing standards
in conjunction with federal, provincial and territorial Deputy Ministers of Health to ensure official
support from their ministries and governments.
CIHI should also continue to play a lead role in
Canada in international standards deliberations
in the area of health informatics and telematics.
Finally, Industry Canada and the SCC should
establish a standards development organization
for health informatics and telematics based on a
partnership between CIHI and CSA, to draw on
the strengths of both organizations.
Recommendation
6.1 To strengthen significantly the development
and implementation of standards in health
informatics and telematics, it is necessary
that:
(d) CIHI play a lead role for Canada with
respect to international standards deliberations in the area of health informatics
and telematics (e.g. ISO TC 215); and
(e) Industry Canada and the standards
Council of Canada establish a standards
development organization for health
informatics and telematics, based on a
partnership between CIHI and the
Canadian Standards Association.
Testing for Compatibility
The all too frequent difficulties associated with
hardware and software conflicts on a desktop
computer will be nothing compared to the challenges posed by the complex networks forming
the Canada Health Infoway. Within the infostructure, there will be many layers of networks –
first at the institutional and local or regional
levels and then moving on to the provincial,
territorial and federal levels and ultimately to
the interjurisdictional level. Each component
network will have its own hardware, software
and applications – including electronic security
systems and privacy-enhancing technologies to
protect personal health information – purchased
from different vendors at different times. All of these will
be expected to work together “The all too frequent difficulties
in the Canada Health
associated with hardware and
Infoway.
(a) federal, provincial and territorial governments provide sufficient funding for
standards development in health informatics and telematics to the Canadian
Institute for Health Information (CIHI);
software conflicts on a desktop
computer will be nothing compared to the challenges posed by
the complex networks forming the
Canada Health Infoway.”
(b) measures be taken to ensure citizen
participation in the standards development process through, for example, the
CIHI partnership initiative;
(c) CIHI achieve a formal process for
identifying, ratifying and implementing
standards with federal, provincial and
territorial Deputy Ministers of Health
to ensure buy-in from provinces and
territories at the level of officials;
Canada Health Infoway
Paths to Better Health
6-3
The process of developing and implementing
standards through CIHI and the CSA, as
described above, will be important in meeting
this challenge. Market forces will also generally
serve to pressure vendors into trying to ensure
that their products are compatible with others.
However, the electronic environment of a health
infostructure is so complex and many of its
functions are so critical to the health and lives of
patients that it will not be sufficient to accept
vendors’ assurances about compatibility. Nor
can it be assumed that a standards development
and implementation process will reveal all
potential sources of conflict. For these reasons,
the Council believes it is only prudent for
Health Canada to work with the Canadian
Network for the Advancement of Research,
Industry and Education and other organizations
to ensure that facilities are available to test the
compatibility between new and existing products
before they would actually be used on the
networks forming the Canada Health Infoway.
6-4
Canada Health Infoway
Recommendation
6.2 Health Canada should work with the
Canadian Network for the Advancement of
Research, Industry and Education, and
others as appropriate, to ensure that test-bed
facilities are available to analyse the compatibility of new health application
products with other health applications,
including those already being used on
Canadian health networks.
Because many compatibility issues can be
resolved only through actual experimentation,
the Council also believes that Health Canada
should offer incentives for provincial and territorial governments to work jointly on projects to
refine and resolve such issues.
Recommendation
6.3 Health Canada should provide incentives
for provincial and territorial governments
to develop and carry out joint projects that
will refine and resolve compatibility issues
in health networks across Canada.
Paths to Better Health
chapter seven
An Aboriginal Health
Infostructure
H
ealth Canada has a special responsibility
for the delivery of health care services to
First Nations and Inuit communities. The
Advisory Council commissioned two papers by
the Assembly of First Nations (AFN) to explore
Aboriginal health information needs and the
potential of an Aboriginal Health Infostructure.7
This chapter is based largely on these papers.
They show that, if an Aboriginal Health
Infostructure is to emerge, it must reflect the
aspirations of Aboriginal communities. They
must also be fully consulted throughout its
development and implementation. Secondly, the
unique needs of Aboriginal communities
demand an approach to building a health infostructure that is appropriate to those needs.
In the Council’s view, the recommendations below
represent a strong foundation for advancing the
health infostructure in Aboriginal communities
and should be used in consultations with representatives of all Aboriginal communities.
A Unique Approach to
Health Information
There are important differences between
Aboriginal and other Canadian communities.
These must be taken into account when developing the Canada Health Infoway.
For example, First Nations and Inuit communities
have a recognized fiduciary relationship with
the federal government. Particularly in the case
of Metis and urban Aboriginal communities,
jurisdictional disputes between levels of government complicate this relationship. As well, all
Aboriginal groups insist on “a historical and legal
right to self-government,” which means the right
to develop autonomous institutions mandated
to serve the needs of each population. For First
Nations, these rights are grounded in Treaty
agreements. For other Aboriginal groups, these
rights flow from various legislative agreements.
The Aboriginal population in Canada is also quite
varied, belonging to several distinct cultural and
political communities with unique concerns and
needs. Most health information now available
on Aboriginal peoples pertains to the Inuit, and
to First Nations people living on reserve. Very
little is available to describe Metis and urban
Aboriginal people. Aboriginal populations also
make up widely varying proportions of the general population in different geographic regions.
In some instances, they make up the majority.
7
Assembly of First Nations, An Aboriginal Health
Infostructure – Critical Issues and Initiatives –
Background Paper, AFN, October 1998, Ottawa;
Assembly of First Nations, An Aboriginal Health
Infostructure – Social/Political/Operational Issues –
Background Paper, AFN, October 1998, Ottawa.
Canada Health Infoway
Paths to Better Health
7-1
Poverty, lack of economic opportunities and low
educational attainment severely afflict the
Aboriginal population. All have been recognized
as contributors to poor health status, and the
health status of Aboriginal people is much
worse than that of the average Canadian. Health
care services have eased this situation somewhat. However, they have also contributed to a
gradual erosion of traditional, holistic approaches
to health and healing.
Research on Aboriginal health problems and
their interpretation by external agencies such as
universities, government departments and the
media have caused growing concern during the
past few decades. For this reason, any attempt
to develop health information systems without
the full participation of Aboriginal communities
will fail.
Aboriginal communities across the country are
developing new institutions and ways to foster
community development and wellness for their
people. Those federal, provincial and territorial
programs allowing for autonomous and creative
Aboriginal approaches to
economic and community
“Aboriginal communities across
development have been the
most successful in supporting
the country are developing new
Aboriginal efforts to improve
social and health conditions
institutions and ways to foster
in their communities.
community development and
wellness for their people. Those
federal, provincial and territorial
programs allowing for
autonomous and creative
Given this situation, certain
principles should govern our
approach to ensuring that the
Canada Health Infoway meets
the needs of Aboriginal
communities.
Aboriginal approaches to economic
and community development
have been the most successful in
• Self-determination – Experience shows that
successful developmental initiatives occur in
an emerging context of self-determination. In
many communities, particularly those of Inuit
and on-reserve First Nations, this context is best
characterized as a move toward self-government. The AFN believes that “Aboriginal
people are not an ‘interest group’ in the same
sense as other constituencies consulted by the
Advisory Council on Health Infostructure.
For historical and judicial reasons, Aboriginal
people have fundamental rights to
autonomous institutional development that
cannot be met without a commitment to
independent institutional development.”
• Knowledge is power – A necessary precondition for self-government is the institutional
capacity to direct and control how the information used to determine policy, and
implement and evaluate programs is assembled.
As the AFN points out, “Control over databases, research and the analytical process of
linking health information to policy and
program outcomes is essential for Aboriginal
communities.”
• Inequities in human resource capacity and
institutional development – Aboriginal
communities are now making large strides in
creating new educational resources and structures. Such capacity building in developing
and managing information is urgently needed
if a health infostructure is to be useful or
meaningful to Aboriginal communities.
According to the AFN, “the obvious analogy
of the health infostructure to the development
of the national railroad can be extended to
Aboriginal people. Without the institutional
and human resource capacity to participate
as equals in the development of the health
infostructure, the effect on Aboriginal communities could be as destructive as the
historical impact of the railroad.”
supporting Aboriginal efforts
to improve social and health
conditions in their communities.”
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Canada Health Infoway
Paths to Better Health
In light of these realities and in recognition of
these principles, it is the Council’s view that there
should be an Aboriginal Health Infostructure,
strategically interconnected to the Canada
Health Infoway. However, it should be an
autonomous and distinct institutional development consistent with Aboriginal interests.
Recommendation
7.1 Health Canada should consider an
Aboriginal Health Infostructure, strategically
interconnected to the Canada Health
Infoway, as an autonomous and distinct
institutional development consistent with
Aboriginal interests.
Given the strong tradition of autonomy in
Aboriginal communities, and their extensive
variety with respect to situation and needs, it
would be unwise to assume that top-down plans
can be developed for an Aboriginal Health
Infostructure. Aboriginal groups will have to
conduct extensive consultations with Aboriginal
communities on the principle of an Aboriginal
Health Infostructure, on how best to develop
and implement it, and/or on Aboriginal participation in the Canada Health Infoway. Because
Aboriginal communities are scattered across the
country, many in remote, isolated locations,
resources will be needed for such consultations.
Recommendation
7.2 Health Canada should provide financial
resources for Aboriginal groups to undertake
further consultation and communications
with governments, private sector groups
and each other to confirm and further
develop the concept of the Aboriginal
Health Infostructure and define plans for
its development and implementation
and/or determine the nature and scope of
Aboriginal participation in the Canada
Health Infoway.
Steps Toward an Aboriginal
Health Infostructure
For an Aboriginal Health Infostructure to succeed,
several key steps must be taken. First, it will be
vital to ensure that people in Aboriginal communities – particularly health professionals and
providers, but also community workers – can
take advantage of a health infostructure.
Second, a serious need exists to build on present
initiatives intended to develop comprehensive
health information on Aboriginal people. Third,
the communications infrastructure serving
many Aboriginal communities requires considerable attention if such health information is to
be available at the right time.
The Human Basis for a Health
Infostructure
According to the AFN, a dedicated effort will be
required to ensure that Aboriginal communities
have the capacity in human terms to take full
advantage of an Aboriginal Health Infostructure.
What is needed is training in information technology and the development of sophisticated
management skills.
At present, many Aboriginal
health care workers lack the
“[Aboriginal health care workers’]
training to use computers,
modems and the Internet
unfamiliarity with and fear of
effectively. In many cases,
training dollars and programs new information technology is an
have simply been unavailable effective barrier that impedes them
to these community health
from attaining basic computer
workers, who are often the
mainstays of their local health
skills that would enhance
care systems. They often also
lack the time to take advanunderstanding and comfort levels
tage of the new technologies.
with this technology.”
As the AFN comments,
“It is the Aboriginal take on
Assembly of First Nations
catch-22. Aboriginal health
November 1998
care workers do not have the
training resources or the time,
in the face of heavy workloads, to access the
training that will enable more efficient use of
time in the workplace. Their unfamiliarity with
and fear of new information technology is an
effective barrier that impedes them from attaining basic computer skills that would enhance
understanding and comfort levels with this
technology.”
Canada Health Infoway
Paths to Better Health
7-3
There is also a need to develop new managerial
capabilities in Aboriginal communities as a basis
for fully taking advantage of the opportunity
posed by a health infostructure. As the AFN puts
it, it is a matter of “developing and applying
abilities to govern and manage, solve problems,
respond to new situations, make informed,
evidence-based decisions, to strategically plan,
to identify and set priorities, to evaluate, to
effectively and efficiently manage resources
(human and fiscal) and to take responsibility for
the success or failure of health interventions and
have the commitment to try again.”
It will be particularly important to ensure that
resources for training aimed at developing such
capacities are made available to meet needs
directly relevant to an Aboriginal Health
Infostructure and Aboriginal participation in the
Canada Health Infoway.
Recommendation
7.3 Health Canada should ensure that resources
committed and dedicated for capacity
development and training are designated
for Aboriginal people to support the
Aboriginal Health Infostructure and
Aboriginal participation within the Canada
Health Infoway.
Developing Health Information
Resources
Several key initiatives are under way which
have the potential to provide vital information
sources for the Aboriginal Health Infostructure.
The first is the First Nation and Inuit Regional
Longitudinal Survey, which arose in the context
of a National Longitudinal Survey funded by
Health Canada in 1996 after a pan-Canadian
consultation. The regional survey involved nine
regions, each of which developed and conducted
its own survey process within the framework of
the national survey. The purpose was to facilitate
a process owned and controlled by First Nations
and Inuit that involved community-based
participatory research and surveillance of health
status and health determinants; and an evaluation
of health care delivery over time. The initial
phase of the project is now nearing completion.
The AFN has mandated moving to the next
phase, a longitudinal survey to be conducted
every four years, starting in 2001.
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Canada Health Infoway
In the Council’s view, the First Nation and Inuit
Regional Longitudinal Health Survey Project
provides a unique opportunity for First Nation
and Inuit peoples to own, control, manage and
validate a pan-Canadian research process. The
survey will also supply important health data
and community information, help identify
health and social priorities, and provide a basis
for evaluating health programs and services.
Recommendation
7.4 Health Canada, in partnership with other
federal departments, should support and
fund the First Nation and Inuit Regional
Longitudinal Health Survey process. This
would enable a sustained, ongoing,
comparable source of First Nation and
Inuit population health information, data
collection, research and analysis capacity
within a process validated and supported by
First Nation and Inuit peoples, regionally
and nationally.
The First Nations Health Information System
(FNHIS) is a community-based health information
and surveillance system now being used by
45 First Nations communities. Health Canada
plans to make it available by March 2000 to all
First Nations, primarily through web-based
technologies.
The FNHIS will strengthen the health information
and surveillance capabilities of First Nations
communities. However, for this potential to be
fulfilled and the initiative to be sustainable at the
community level, local users will need computer
skills and training in information management.
In addition, communities will need a reliable
communications infrastructure capable of
supporting high-speed data transfers. Finally, it
will be important to recognize the principle of
Aboriginal control over Aboriginal data. For all
these reasons, it is the Council’s view that, while
the FNHIS deserves support, this should be
provided in the context of developing a comprehensive Aboriginal Health Infostructure.
Paths to Better Health
Recommendation
7.5 Health Canada should provide additional
resources for the First Nations Health
Information System, but only on a sustainable basis and in the context of developing
a comprehensive Aboriginal Health
Infostructure which will involve a
multifaceted, interlinked process involving
many initiatives; some currently under way
and others to be developed.
Improving the Communication
Infrastructure
Most remote and rural Aboriginal and nonAboriginal communities lack the communications
infrastructure to support reliable high-speed
transmission or reception of data, images or text.
Few such communities can support reliable
transmission at 28.8K, generally considered the
minimum for Web browsing. Technical problems
are common among many of the older cable,
analog satellite or microwave links used to bring
in information to these communities. Most
remote communities lack toll-free access to an
Internet Service Provider, which makes Internet
use too expensive. In the Council’s view, the
current communications infrastructure in rural
and remote Aboriginal and non-Aboriginal
communities alike should be assessed as a matter
of urgency, with a view to ensuring high-speed
data transmission and a level of affordable,
high-quality service.
Recommendation
7.6 Health Canada should take the lead, with
other federal departments, to ensure that the
state of the communication infrastructure in
Aboriginal and non-Aborignal communities
alike is assessed in order to undertake
technical enhancements to support highspeed data transmission and enable
accessible, affordable and reliable use
of the Canada Health Infoway.
Building Health by Building
Infostructure
Virtually all analyses of the impact of health
determinants emphasize the negative effects on
health of the poverty and unemployment
endemic to many Aboriginal communities. For
this reason, the Council believes that, to the
degree possible, the economic benefits of
building an Aboriginal Health Infostructure
should stay within Aboriginal communities. Such
an approach means providing the appropriate
training opportunities for members of those
communities, co-venturing with Aboriginal
businesses and giving them access to tenders,
involving the entire community in the development of the infostructure, and so on. This
partnering approach, combined with the provision
of training, will also ensure that the human
resource basis exists within the community to
support and fully take advantage of the
Aboriginal Health Infostructure.
“Saskatchewan’s largest non-government Internet
provider is owned by First Nations. File Hills Internet,
started in 1995 by the Peepeekisis First Nation of
Saskatchewan and now owned by the five First Nations of
the File Hills Tribal Council, has aggressively moved into
the Internet market via formal partnerships. This has
provided opportunities for First Nations in construction,
technology hardware maintenance and has opened the
door to advancement in future technologies. For the
president of the File Hills consortium, economic development means ‘quality jobs that (First Nations) people can
do, not labour-intensive jobs, not make-work projects, but
good sound career opportunities in many different fields
of business.’”
Assembly of First Nations
November 1998
Canada Health Infoway
Paths to Better Health
7-5
Recommendation
7.7 Health Canada, in partnership with other
federal departments, should make a sustained commitment to the development of
an economic infrastructure, as it relates to
the development and implementation of the
health infostructure in Aboriginal communities. In doing so, the health infostructure
initiative will facilitate employment, career
development, capacity building, increased
economic development, personal and
community income, community stability,
training opportunities and improvements
to the health and social condition of
Aboriginal peoples.
7-6
Canada Health Infoway
Paths to Better Health
chapter eight
Technology Transfer and
Public-Private Sector
Collaboration
N
ew information and communications
technology remains one of the foundations
for the Canada Health Infoway. This technology
is continuing to change very quickly. It will be
critical to have mechanisms in place that will
allow the health sector to monitor developments
and adopt the most cost-effective solutions.
Collaboration between public and private sectors
represents one of several promising approaches.
Technology Transfer
The ongoing revolution in information and
communications technology remains one of the
driving forces behind the development of the
Canada Health Infoway. The transformations
have been profound. For the last 25 years, the
speed of computers has been doubling every
18 months. Some would argue that the capacity
of our communications systems has been doubling
at about the same rate. The Internet is only one
of the most apparent results of this technological
revolution. Less visible are the ongoing advances
in satellite and wireless technologies. These
increasingly have the potential to bring powerful
communications links into remote and rural
areas and other locations where wires are
impracticable or less effective.
Some segments of the health sector have been
quite slow in adopting information and communications technology. This is partly because of
a concern about technology’s impact on the
relationship between patient and physician or
provider which lies at the foundation of health
care. For this reason, it will be critical to ensure
that health infostructure applications strengthen
this relationship.
However, it is also necessary to recognize that
this relationship is changing. For example,
patients and people in general increasingly look
to sources of health information in addition to
consulting their health care professional and
provider. They worry that both the quality and
accessibility of health care are declining. They
are demanding greater accountability from the
system at all levels. As Chapters 2, 3 and 4
demonstrate, information and communications
technology, properly deployed and used, can
strengthen the provider–patient relationship by
responding to these concerns. At the same time,
it can provide feedback as a basis for continuous
improvement in the health care system.
Canada Health Infoway
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8-1
It is also important to appreciate that the pace of
change will continue to accelerate. In five years,
the technological landscape may look very
different. New health care applications in the
areas, for example, of tele-homecare or telehealth
will likely have far-reaching implications and
provide the basis for new kinds of services to
patients and the public. Ultimately, there may
be a move from personal computing (where
people have a computer on their desktops) to
pervasive computing, where chips are embedded
in a wide range of everyday office, household
and health products. This change could well
eliminate many of the problems associated
with today’s applications of information and
communications technology.
Recommendation
8.1 Health Canada should take the lead in
developing, in cooperation with provincial
and territorial ministries, other federal
departments, and associations of health
care professionals, providers and institutions,
a process to involve health care professionals,
providers and institutions in:
For this reason, it will be
necessary to ensure that the
“New health care applications
health sector has an effective
means of monitoring relevant
in the areas, for example, of
technological developments.
tele-homecare or telehealth will
Evaluations of health applications of technology and
likely have far-reaching
information on best practices
implications and provide the basis in deploying it for health purposes continue to accumulate
for new kinds of services to
in Canada and around the
world. It will be important to
patients and the public.”
gather, collate and disseminate
these data throughout
Canada’s health sector. It will also be vital to
promote, using incentives and other means,
innovative uses of the technology to deliver
health information and health care services.
Finally, because human interaction and the
relationship between provider and patient are
so central to health care, the human and
behavioural aspects of using the technology
deserve careful attention.
In the Council’s view, Health Canada should
take the lead, with provincial and territorial
health ministries, other federal departments,
and associations of health care professionals,
providers and institutions, in involving
association members to carry out these tasks.
8-2
Canada Health Infoway
Paths to Better Health
(a) monitoring technological developments
in Canada and around the world that
may be relevant in delivering health
information and health care services;
(b) gathering, collating, disseminating and
using information from Canada and
around the world on best practices and
evaluations in ways of deploying information and communications technology
in health;
(c) promoting, through incentives and other
means, ongoing innovation in using
information and communications technology to deliver health information and
health care services; and
(d) addressing the human and behavioural
impacts of adopting information and
communications technology in health.
Public-Private Sector
Collaboration
Collaboration between the public and private
sectors can be an effective means of ensuring the
development or adoption of technology within
the health field. In this context, we mean such
technology as hardware, software, systems
design, system architectures, etc. We do not
mean data or service delivery, which can raise
sensitive issues, including the possibility of
gradual privatization.
The terms “public sector” and “private sector”
can each comprise a wide variety of different
kinds of organizations. For example, the public
sector can include government and many different types of public agencies with different
degrees of accountability to government. The
private sector can include companies whose
primary aim is to make a profit, as well as notfor-profit organizations such as the Canadian
Network for the Advancement of Research,
Industry and Education, some research centres
and a range of non-governmental organizations,
as well as others.
Collaborations can involve combinations of all
these different types of organizations. It is in
keeping with the Council’s cooperative vision of
the Canada Health Infoway that its development
and implementation, at least in terms of technology development, will involve collaboration
among the public sector and private not-forprofit and for-profit organizations.
In the Council’s view, collaborations between
public and private sectors in the area of technology development can add value and advance
the building of the Canada Health Infoway. The
scope of possible arrangements is great, and
individual circumstances will largely dictate
contractual terms. However, the Council believes
that government has the responsibility to define
clearly its approach to public-private collaboration and transparently examine its implications
in light of the following principles:
• all such collaborations must pay fastidious
attention to safeguarding privacy and
protecting health information;
• all such collaborations should respect
and reinforce the principles of the Canada
Health Act;
• all such collaborations should respect and
reinforce public administration of the health
system;
• as part of the normal contracting process
where intellectual property with a potential
for commercialization is likely to be developed, the return to the parties should be in
line with the contributions made and the
risks assumed by the parties; and
• to the extent possible, commercialization of
intellectual property should occur in
Canada.
The rationale for the public sector’s collaboration with its private sector counterpart usually
revolves around a desire for a commercial product or a need to leverage resources, or acquire
skills or access to expertise not present in the
public sector. If the financial resources or necessary technological expertise do not exist in the
public sector, collaboration with the private sector can enable more rapid technological development at less cost than if the public sector first
had to develop the necessary expertise in-house.
The rationale for the private sector’s collaboration with its public sector counterpart usually is
due to Canada’s small and fragmented market.
Collaboration with the public sector opens up a
critical portion of this market and helps provide
a firm domestic base for export.
Canada Health Infoway
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8-3
chapter nine
A Strategic Investment
F
unding for the Canada Health Infoway is not
an investment where short-term payoffs
provide a sufficient rationale. The Canada Health
Infoway is a strategic infrastructure that will
transform and have impacts on the Canadian
health care system and the health of Canadians
in the long term. It is a positive revolution in the
making. Investments in health infostructure –
and in its essential building blocks at the
provincial and territorial level – must take the
long-term view. Through such investments, we
will help create the Canadian health care system
of the 21st century – one in which the public
attains a new level of empowerment, health care
services are stronger and much more integrated,
new information resources enhance accountability
and decision making at all levels, and privacy
protection is significantly improved.
An Infrastructure for the
21st Century
At present, many provincial and territorial health
infostructures have difficulty securing funding,
even though these will have a far-reaching
positive impact on provincial and territorial
health care systems and will be vital parts of the
Canada Health Infoway. The Canadian health
care sector also lags considerably behind other
sectors of the economy and the US health care
industry in investment in information systems.
The present Canadian situation also contrasts
sharply with developments in the United
Kingdom where, as Chapter 1 notes, the
British government is planning to put more than
£1 billion into its health information strategy for
the National Health Service over the next seven
years. Other governments of industrialized
countries are preparing to do the same.
In all of these examples, the rationale for the
investment depends only partly on short-term
gains, which certainly do exist. The main focus
is on strategic gains that will manifest themselves
over the long term as better ways of delivering
health care services and using information.
Various Canadian stakeholders, including those
operating provincial and territorial health information systems, have told the Council that it is
impossible to develop a strategic new way of
delivering health care services and information
with long-term benefits by pulling funds out of
existing health capital and often declining
operating budgets. The Council agrees with this
view. Without new money, most provincial and
territorial health infostructures will not be realized and the Canada Health Infoway will not
come into existence.
As the Canadian Practical Nurses Association
pointed out in its comments on our interim
report, “It is imperative that these initiatives be
funded with ‘new’ money rather than withdrawals from the current cash-strapped system.
Done right, this health infostructure has the
potential to alter, positively, the way information
is shared and utilized to the benefit of the health
of Canadians. This will take money, and cannot
occur at the expense of other programs and
services that have already incurred near-mortal
wounds.”
Canada Health Infoway
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9-1
Investment in the Canada
Health Infoway or its provin“Developing a Canadian health
cial and territorial foundations
infostructure can be compared to is clearly not an investment
like any other. The infobuilding a transcontinental
structure is a strategic, panrailroad or highway, but this time Canadian infrastructure, and
its funding should be regarded
it is our health care system in the as a strategic, national infrastructure investment decision.
knowledge society and digital
Developing a Canadian health
world of the 21st century.... We
infostructure can be compared
believe investments in the Canada to building a transcontinental
railroad or highway, but this
Health Infoway will be of similar time it is our health care
system in the knowledge
benefit for the health care system society and digital world of
the 21st century. While many
and the health of Canadians.”
were uncertain about investments in the railroad in the 1870s or in an electric
power grid at the turn of the century, few would
disagree now about the transformations and
effects brought about by those strategic infrastructure investments. We believe investments
in the Canada Health Infoway will be of similar
benefit for the health care system and the health
of Canadians. These effects are readily apparent
if we look at where we are now and where we
can be if we carry through on the Council’s
strategic framework and the initiatives recommended in this report.
Investments in the Canada Health Infoway can
also create industrial and economic opportunities
for Canada. Development of a national health
infostructure is on the agenda of virtually every
industrialized country in the world. Canada is an
acknowledged world leader in telecommunications. If we invest now in the Canada Health
Infoway and act on the recommendations in this
report, we also could become world leaders in the
development of a health infostructure. With this
lead, it would be possible to build on our
telecommunications expertise to develop and
export network solutions and a range of software
applications in health. These include disease
surveillance systems, a variety of decision-support
tools to facilitate evidence-based decision making,
and applications to support consumer access to
quality health information. In the course of
building the Infoway, these will have been
developed in close cooperation with health care
professionals and providers and will therefore
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Canada Health Infoway
be of practical value to their counterparts in
health care systems around the world. The
industrial and economic opportunities for
Canada will be very significant.
From Promise to Reality
The Council is convinced the Canada Health
Infoway is a strategic element for the Canadian
health care system. We believe it will be critical
to ensuring that this publicly funded and
administered system can meet the challenges
and seize the opportunities of the 21st century.
The Council also believes that, by empowering
people, by responding to Aboriginal needs, by
improving both the quality and accessibility of
health care services, the Canada Health Infoway
will respond to the deeply held values of compassion, caring and equity which provide the
foundation for Medicare in Canada.
The Council also believes that very few Canadians
understand what a health infostructure is or what
it can accomplish. For this reason, we consider it
a matter of utmost importance that federal,
provincial and territorial governments undertake
a public awareness campaign at the community
level to ensure that people have an opportunity
to grasp the importance of and need for infostructure investments and become involved in
developing the Health Infoway.
Provincial and territorial health information
systems represent the building blocks of the
Canada Health Infoway. But often there is far
too little collaboration, information sharing and
mutual learning from systems evaluations to
ensure that the benefits derived from them are
fully understood. It is important to emphasize
that health infostructure systems should be
judged not for their advanced technologies but
for their actual contribution to the health of
Canadians.
Finally, however fundamentally important
provincial and territorial health infostructure
initiatives may be, they may not meet all national
needs. Such needs must be identified and
addressed by Health Canada in partnership
with provincial and territorial health ministries.
Paths to Better Health
Recommendation
Recommendation
9.1 In partnership with provincial and territorial
ministries of health, Health Canada should:
9.2 In transferring funds to provincial and
territorial governments for health purposes,
the Government of Canada should work
with provincial and territorial governments
to ensure:
(a) undertake public awareness and participation campaigns at the community level
to underscore and give a high profile to
the importance of strategic health infostructure investments;
(b) promote collaboration, information
sharing and mutual learning with
respect to the evaluation of health infostructure initiatives and the benefits to
be derived from them;
(c) ensure that all health infostructure projects
and programs demonstrate the relationship of their proposed objectives and
expenditures to the goal of improving or
maintaining the health of Canadians and
that they contain evaluative mechanisms
to that effect; and
(a) allocation of a portion of the funding to
developing provincial and territorial
health infostructures;
(b) mutual collaboration among provinces,
territories and Health Canada on
developing the Canada Health Infoway,
as detailed in this report; and
(c) implementing a system for all provincial
and territorial governments to set their
own plans and priorities in the context of
the jointly developed Canada Health
Infoway.
(d) identify and meet national needs that
remain unaddressed by provincial and
territorial health infostructure initiatives.
As mentioned earlier, the Council was repeatedly
told that without new money the present set of
ambitious provincial and territorial health infostructure initiatives will suffer and new ones will
disappear at the conceptual stage. For this reason,
the Council believes that, in transferring funding
for health purposes to provincial and territorial
governments, the Government of Canada should
work with provincial and territorial governments
to ensure that a portion goes to development of
their health infostructures, that they collaborate
in developing the Canada Health Infoway, and
that their own plans and priorities are set within
the context of a jointly developed Canadian
health infostructure.
Canada Health Infoway
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9-3
chapter ten
Moving Forward
F
or most Canadians, our publicly administered health care system is so fundamental
that it is a defining feature of our nationality.
The Council believes that the Canada Health
Infoway can strengthen that system enormously,
making it more accountable to Canadians and
more capable of serving them effectively and
efficiently – in short, in the way they have come
to expect.
Telehealth and tele-homecare, for example, should
greatly strengthen the quality and accessibility
of health care in Canada – in rural and remote
areas and in the home and community. Health
information systems may well represent our
best chance to fully and effectively integrate the
many health care services involved in today’s
complex health system. This infostructure will
also give people the information they need to
make more informed decisions about their own
health and that of others. One result will be
better decisions by health professionals, administrators and policymakers. Another will be a
new capacity of patients and individual
Canadians to take control of their own health
and hold the entire health sector to higher
standards of accountability. Another consequence
will be improved privacy protection within the
health sector.
In light of these objectives, we have set down
broad strategic directions on how to develop
and implement the Canada Health Infoway.
With publication of this report, the Council’s
work and mandate are over.
Now it is your turn. The task ahead is enormous.
It involves building a new strategic infrastructure
for our health care system – one that will ensure
its capacity to survive and prosper in the
21st century as a publicly funded and administered health care system.
As a federal advisory council appointed by a
health minister, the Council has directed many
of its recommendations to the Minister of
Health and Health Canada. But we wish to
emphasize that this is a job that will involve
more than one minister and one department. We
anticipate that a number of federal departments
and agencies will have to contribute to the
building of the Canada Health Infoway.
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10-1
Most important of all in this endeavour will be
close partnership and ongoing participation with
provincial and territorial governments, particularly their health ministries which carry most of
the responsibilities for health care delivery.
But collaboration will also have to extend
beyond governments to health care professionals
and providers, health care institutions, health
managers, health researchers and health policymakers. It will also be critical to involve the
associations representing all these groups, as
well as both the for-profit and not-for-profit
segments of the private sector.
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Canada Health Infoway
Most of all, the Council believes that it is critical
that the public be involved in shaping the
Canada Health Infoway. As patients, as caregivers,
as citizens, as health consumers, people must
use their influence to ensure that the Canada
Health Infoway meets their needs and improves
health care. The infostructure must ultimately
serve as a fundamental way to ensure that our
health care system remains fully accountable to
the people using it.
Paths to Better Health
Glossary
encryption – The coding of data for privacy
protection or security considerations.
health infostructure – The application of communications and information technology in the
health sector to allow the people of Canada (the
general public, patients and caregivers, as well
as health care providers, health managers, health
policymakers and health researchers) to
communicate with each other and make
informed decisions about their own health, the
health of others, and Canada’s health system.
information exchange protocols – Standards
that typically define message formats for the
electronic exchange of information. Some information exchange protocols also define codes for
specific fields in the messages. See standards.
information privacy – A subset of privacy, it
involves the right of individuals to determine
when, how and to what extent they will share
personal information about themselves with
others. Protecting information privacy involves
protecting personal information and following
fair information practices. See privacy.
Internet – A vast international network of
networks that enables computers of all kinds to
share services and communicate directly. It is
the largest and fastest growing international
computer network, and links individuals, and
academic and commercial organizations.
personal information – Any information about
an identifiable individual that is recorded in any
form, including electronically or on paper. Some
examples would be information about a person’s
religion, age, financial transactions, medical
history, address or blood type. See privacy.
privacy – Most often defined as the right to be left
alone, free from intrusion or interruption, privacy
is an umbrella term, encompassing elements
such as physical privacy, communications
privacy and information privacy. Privacy is
linked to other fundamental human rights such
as freedom and personal autonomy.
public key cryptography – A form of cryptography that uses a cryptographic algorithm which
uses two related keys: a public key and a private
key. The two keys have the property that, given
the public key, it is computationally infeasible to
derive the private key. Public key cryptography
is also called “asymmetric cryptography.” There
are three broad functions of public key cryptography systems: (1) encryption/decryption;
(2) digital signatures; and (3) key exchange.
Some algorithms can perform all three functions
and some can perform only one.
public key infrastructure (PKI) – A structure of
hardware, software, people, processes and policies
that employs digital signature technology to
facilitate a verifiable association between the
public component of an asymmetric public key
and a specific end entity. The public key may be
provided for digital signature use and/or for
message encryption key exchange or negotiation.
standards – Documented agreements containing
technical specifications or other precise criteria
to be used consistently as rules, guidelines or
definitions of characteristics to ensure that
materials, products, processes and services are
fit for their purpose.
technical standards – Standards describing the
specific attributes of technology. This may
include specifications for physical interfaces.
See standards.
telehealth – Use of information and communications technologies in the delivery of health
information, services and expertise over short
and long distances.
tele-homecare – The use of electronic communication networks for two-way transfer of information and data required for medical diagnosis,
treatment, consultation and/or health maintenance between a patient’s residence and a
health care facility.
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Annex A
Advisory Council on Health
Infostructure
Members
Richard Alvarez is the President and Chief
Executive Officer of the Canadian Institute for
Health Information (CIHI). Mr. Alvarez has had
a distinguished career in the Canadian health
sector, both at the national and provincial levels.
He has served as Chairman of the National
Health Information Council (NHIC), as the
Chairman of the Interim Board of the CIHI and
has been a Trustee of Alberta Blue Cross. Before
joining the Institute, Mr. Alvarez was an
Assistant Deputy Minister with Alberta Health.
Danièle Bertrand is one of the leading executives
in the Canadian telecommunications industry.
She is President of the Innovation Centre, which
was established by Stentor in 1996. As President,
she is responsible for identifying and promoting
new businesses in the field of telecommunications.
She works with leaders in innovative technologies
and with the nine telcos that comprise the
Stentor Alliance. It is a position that draws on
her creative business, diplomatic and technology abilities. Before her current appointment,
Ms. Bertrand was Managing Director, Corporate
Development, at Stentor Resource Centre Inc. Her
responsibilities as Managing Director included
strategic and financial planning, market research
and evaluating business opportunities.
Andrew Bjerring has been President and Chief
Executive Officer of the Canadian Network for
the Advancement of Research, Industry and
Education (CANARIE) since October 1993. His
involvement as a founding member and Secretary
of the Board of Directors with CANARIE dates
back to its beginning in 1990. Before his
appointment at CANARIE, Dr. Bjerring spent
nine years as Director of Information Technology
Services, and six years as Assistant Vice President
(Academic Planning and Budgeting) at the
University of Western Ontario.
Madeline Boscoe is Executive Coordinator of
the Canadian Women’s Health Network (CWHN).
The CWHN’s key goal is information exchange
and networking for consumers, community
groups, researchers and providers, through
mechanisms such as an on-line clearinghouse. In
this capacity, the CWHN is an active participant
in the Centres of Excellence in Women’s Health
Research program. She has lengthy experience
in the areas of health promotion, community
development and policy analysis, most recently
with the Women’s Health Clinic, a community
health centre in Winnipeg.
George Browman is the Scientific Program
Leader of HEALNet (Health Evidence Application
and Linkage Network) and Professor and Chair
of the Department of Clinical Epidemiology and
Biostatistics at McMaster University. He also
leads the Ontario Cancer Treatment Practice
Guidelines Initiative and, in September 1997, he
became Director, Program in Evidence-based
Care for Cancer Care Ontario. He is still active
as a medical oncologist and health sciences
researcher. Dr. Browman maintains a clinical
oncology practice at the Hamilton Regional
Cancer Centre.
Monique Charbonneau is the President and Chief
Executive Officer of the “Centre francophone
d’informatisation des organisations” (CEFRIO).
Her career has included management positions
over a 10-year period with the federal government
in Ottawa, Montreal and Quebec in the field of
documentation and information. After working
with the “Office de la langue française,” Mme
Charbonneau held a variety of positions in
research and information technologies with the
Quebec Ministry of Communications prior to
joining CEFRIO. She was a member of the
“Comité consultatif du Québec sur l’autoroute
de l’information” and is presently a member
of CANARIE Inc., ACFAS and a number of
administrative councils.
Canada Health Infoway
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Ivan P. Fellegi was appointed Chief Statistician
of Canada in 1985. He was also Vice Chairman
of the Board of the Canadian Institute for Health
Information. Dr. Fellegi has published extensively
on statistical methods, regarding the social and
economic applications of statistics and on the
successful management of statistical agencies.
Debbie L. Good is a Chartered Accountant and
presently an Investment Advisor with Nesbitt
Burns, Charlottetown, P.E.I. Ms. Good was a
member of the National Forum on Health,
serving on the Determinants of Health Working
Group. She was also Chair of the P.E.I. Health
Policy Council, a former Commissioner of the
Hospital and Health Services Commission, and
a former member of the Board of the Queen
Elizabeth Hospital Foundation.
Doug Hull is currently Director General,
Information Highway Applications Branch,
Industry Canada. He is responsible for implementing key elements of Canada’s national
access strategy, including the effort to link all
schools, libraries and rural communities to the
Internet by 1998-99. He also has responsibilities
related to fostering the conversion of public
services for electronic service delivery and for
stimulating the emergence of world-class
telelearning and telehealth sectors in Canada.
Mary Ellen Jeans is the Executive Director of
the Canadian Nurses Association (CNA).
Dr. Jeans has practised as a staff nurse,
researcher, educator and administrator. Before
her appointment to the CNA in 1996, she was
Director General, Extramural Research Programs
Directorate, Health Canada where she was
responsible for the National Health Research
and Development Program. From 1983 to 1992,
she was Director, School of Nursing, McGill
University in Montreal.
André Lacroix is an endocrinologist at Hôtel-Dieu
pavillion of Université de Montréal Teaching
Hospital (CHUM) in Montreal, and a Professor
of Medicine and Director of the Endocrinology
Training Program at Université de Montréal. He
is also Co-director of the Telemedicine Unit of
the CHUM Research Centre and President of the
“Comité central du réseau inter-régional de
télémédecine au Québec.” Dr. Lacroix is the
Canadian representative on a G-7 group of
experts in telemedicine systems where he is the
coordinator of the Subproject 4 in telemedicine of
the G-7 Global Health Care Applications Project.
Cameron Mustard is an Associate Professor in
the Department of Community Health Sciences,
Faculty of Medicine, University of Manitoba,
with active interests in health services research
in the areas of mental health, pediatric care,
obstetrics and in chronic disease epidemiology
with a focus on socio-economic disparities in
health status and the utilization of health services.
Dr. Mustard is a member of the Manitoba
Centre for Health Policy and Evaluation and has
recently been appointed to a five-year term as an
Associate of the Population Health Program of
the Canadian Institute for Advanced Research.
David Naylor is Professor of Medicine at the
University of Toronto. A Senior Scientist of the
Medical Research Council of Canada, Dr. Naylor
has received national and international awards
for his contributions to health services research.
He was the founding chief executive officer of
the Institute for Clinical Evaluative Sciences,
which generated Canada’s first detailed report
cards on health status and health care with its
Ontario-based “Practice Atlas” series. Dr. Naylor
is also a staff physician at the Sunnybrook and
Women’s College Health Sciences Centre.
The Honourable Wilbert J. Keon is Director
General of the University of Ottawa Heart
Institute and also a Member of the Senate of
Canada. Dr. Keon has sustained a leadership
role in the surgical, academic and scientific
community throughout his career. Dr. Keon has
led the development of the Heart Institute
which has become one of the world-leading
academic and health care centres.
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Tom W. Noseworthy, co-chair, is Professor and
Chair of Public Health Sciences, Faculty of
Medicine and Dentistry, University of Alberta.
He is an internist and critical care physician.
He served as a member of the Prime Minister’s
National Forum on Health, in which he was a
member of the Evidence-based Decision
Making and Striking the Balance Working
Groups, and Chair of the Steering Committee.
Dr. Noseworthy’s past appointments include
President and Chief Executive Officer and
Vice-President – Medical Services of the Royal
Alexandra Hospital, Edmonton. He currently
chairs the Senior Reference Committee of Alberta
We//net, the province’s health information system.
Alan B. Nymark, co-chair, is Associate Deputy
Minister of Health Canada. Prior to this
appointment, he was Assistant Deputy Minister
of Industry and Science Policy at Industry
Canada. Mr. Nymark joined the Public Service in
1972 and has held various senior-level positions,
for example, with the Privy Council Office,
Department of Finance, and as Assistant Chief
Negotiator on the Canada/U.S. Free Trade
Agreement and subsequently the North American
Free Trade Agreement. Mr. Nymark has worked
in the private sector as a special advisor to the
Royal Bank of Canada and with the International
Monetary Fund in Washington, D.C.
Robert Perreault is the Chief of Preventive
Medicine (HMR), Public Health Directorate,
Montreal Centre. He is also a Professor, Faculty
of Medicine at the University of Montreal and
an Assistant Professor, Faculty of Medicine at
McGill University. In addition, Dr. Perreault is
Co-director of the Research Centre on Health
Promotion in Montreal.
Jeff Reading obtained PhD (1994) and Master of
Science (1990) degrees from the Department of
Community Health at the University of Toronto.
At present, Dr. Reading splits his time between
an academic appointment as Assistant Professor
at the Department of Community Health Sciences,
University of Manitoba, and as a private health
research consultant based in Victoria, British
Columbia. Dr. Reading’s research interests
include the general area of Aboriginal health
with specific research projects concerning the
non-traditional use of tobacco by Aboriginal
peoples, First Nations heart health, diabetes,
Aboriginal Head Start early childhood education
and community-based health promotion for
Aboriginal children. Dr. Reading is a Mohawk
from southern Ontario and lives with his family
in Victoria, British Columbia.
Carl Robbins is Vice-Dean, Professional
Development, and Chair of Telemedicine at the
Faculty of Medicine, Memorial University of
Newfoundland. Prior to this he was Chair of
Family Medicine at the medical school. Past
appointments include Medical Director of the
General Hospital Corporation in St. John’s and
Interim CEO of the Newfoundland Cancer
Treatment and Research Foundation. His interest
in the delivery of health care services to rural
and isolated environments spans three decades
and has included involvement in Memorial
University’s early telemedicine research and
development projects.
Dorothy Spence is the co-founder, President
and Chief Executive Officer of TecKnowledge
Healthcare Systems Inc., a Canadian telemedicine
company. Ms. Spence’s background is in biomedical engineering consulting, sales and business
management in the health care industry.
H. William Thomson, Vice President and
Branch Manager of Sierra Systems Consultants
Inc. – Victoria office is responsible for the firm’s
British Columbia’s health industry consulting.
He is actively involved in management positions
within health care organizations, high-level
feasibility studies and strategic systems planning.
Since 1984, Mr. Thomson’s health care experience
has included various management positions and
health initiatives throughout North America.
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Mamoru (Mo) Watanabe, Professor Emeritus of
Medicine, is former Dean of the Faculty of
Medicine at the University of Calgary.
Dr. Watanabe is a researcher and medical educator,
past Chair of the Board of CANARIE, member
of the National Cancer Institute of Canada’s
Committee on Planning and Priorities, Alberta
Health’s Senior Reference Committee and
Provincial Telehealth Committee. He was an
advisor to the Medical Research Council on
health research and a former member of
Industry Canada’s Information Highway
Advisory Council and the Prime Minister’s
National Forum on Health.
Special Advisors to the Council
John A. Williams is President and Chief
Executive Officer of SmartHealth, a jointly
owned subsidiary of EDS Canada and Royal
Bank. SmartHealth has been contracted by the
Province of Manitoba to design, develop and
implement a province-wide Health Information
Network.
Advisory Council on Health
Infostructure Secretariat
Frank Winter is Director of Libraries for the
University of Saskatchewan Libraries. Before
moving to the University of Saskatchewan in
1980, Mr. Winter held positions with the
University of Windsor Law Library and the
University of Windsor Library.
Pierrôt Péladeau
Centre for Bioethics
Clinical Research Institute of Montreal
Bettylynn Stoops
Health Promotion and Programs Branch
Health Canada
Office of Health and the Information
Highway – Health Canada
Director General
Andrew Siman
Director
Michel Léger
Senior Analysts
Jean-Claude Barre
Patricia Scotcher
Stephen Vail
Analyst
Joyce Adubofuor
Logistics Coordinator
Carmel Cullen
Administrative Support
Maria Rocha-Hug
Report Writer
John Sifton
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Annex B
List of Recommendations
Recommendations from
Final Report
1.
Toward a Healthier Canada
Cooperation – the Critical Success
Factor
1.1 The federal government has a responsibility
to foster mutual cooperation and collaboration among provincial and territorial
governments, Aboriginal communities and
all stakeholders in developing and implementing the Canada Health Infoway.
2.
(b) promote, in partnership with other federal
departments and agencies (e.g. the Canada
Institute for Scientific and Technical
Information) and provincial and territorial
departments and agencies, the ability of
Canadians to access and use evidencebased, non-identifiable health information
to meet their health information needs
and concerns by establishing a fund that
will support demonstration projects;
(c) establish a fund to allow consumer and
health intermediaries to develop and
provide access to consumer health
information; and
(d) support the Canadian Health Network as
one mechanism for providing Canadians
with access to reliable health information.
Empowering the Public
Health Information for the General
Public
2.1 Health Canada, in partnership with
provincial and territorial ministries of health,
should recognize in its funding decisions
for a health infostructure that health information is an essential public good which
should be readily available and accessible
to all Canadians as a component of
Canada’s publicly funded health system.
2.2 To understand better the information needs
of the public, strengthen people’s ability to
access and use evidence-based information,
and provide mechanisms for public access
to reliable health information, Health
Canada should:
(a) undertake, in partnership with other
levels of government and health stakeholders, an investigation of the health
information needs of the general public,
using a variety of culturally and
linguistically appropriate, interactive and
ongoing strategies;
2.3 Health Canada, in partnership with
provincial and territorial health ministries,
should take the lead to:
(a) ensure that standards/benchmarks/
guidelines are developed and implemented
to allow the general public to distinguish
objective, empirically based health information from information intended to
promote a product; and
(b) expand these standards/benchmarks/
guidelines eventually to include rating
criteria for websites providing health
information.
2.4 Health Canada should work with other
health stakeholders to:
(a) ensure that health concerns such as consumer protection with respect to health
products and services are adequately
reflected in the present work of federal,
provincial and territorial governments to
develop legislative and regulatory frameworks for electronic commerce on the
Internet; and
(b) take appropriate alternative action if
health and safety issues are not adequately
reflected in this work.
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2.5 Health Canada should work with other federal departments and agencies and specialists
in the field to encourage development of:
2.9 Health Canada, in partnership with other
federal departments, provinces and territories, and health stakeholders, should:
(a) an Internet search capability which is
specific to health and, at a minimum,
fully and equally meets the needs of
Canada’s English- and French-speaking
communities; and
(a) ensure establishment of a “Canada Health
Space” as a universally accessible health
information/communications commons;
(b) Internet content on health in French and
English.
(c) ensure adequate funding and technical
support to health intermediaries to
develop and/or maintain their capacity
to provide the general public with timely,
credible and “understandable” health
information and to assist in overcoming
access barriers; and
(b) capitalize on and support the nation-wide
networking of health intermediaries;
2.6 Health Canada, in partnership with representatives of user communities such as the
Canadian Association of Public Data Users,
should take the lead in approaching Treasury
Board and other federal departments and
agencies to review the policies and practices
with respect to cost recovery and revenue
generation governing the availability and
redistribution of publicly funded collections,
statistical databases and other government
information relevant to health.
(d) accept, as a normal budgeted cost of
doing business electronically, the need to
sustain health intermediaries and support
them for providing affordable electronic
health information services to disseminate
health promotion, health protection and
other kinds of health information to
wider publics, just as such costs have
been accepted in the paper-based world
in the past.
Ensuring Access
2.7 Investments in the digital networking of the
Canada Health Infoway should be balanced
by appropriate investments in the other
(i.e. non-electronic) mechanisms for sharing
information that can lead to improved health.
2.8 To ensure that health information is accessible on a universal, equitable and affordable
basis, it is vital that:
2.10 Health Canada, in partnership with provincial and territorial ministries of health,
should work closely with Industry Canada
to ensure that all public and not-for-profit
health care institutions in Canada are
aware of:
(a) the Community Access Program; and
(a) the federal government continue to ensure
universal, equitable and affordable access
to existing and future basic telecommunications infrastructure; and
(b) Health Canada, in partnership with
provincial and territorial ministries of
health, take a leadership role in ensuring
that health information and health care
applications for the general public are
developed in such a way as to be accessible
to all citizens, irrespective of their
geographic location, income, language,
disability, gender, age, cultural background or level of traditional or digital
literacy.
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(b) how they can apply for resources to
locate public electronic access facilities
on or near their premises to help ensure
that their clients can use on-line health
information.
2.11 As a means of ensuring more equitable
access to health information and health
care services, Health Canada, in partnership
with provincial and territorial health ministries, should work closely with the
Canadian Network for the Advancement of
Research, Industry and Education, and
Industry Canada to investigate the further
integration of new technologies, including
satellite technologies, into health networks
at all levels.
Paths to Better Health
Public Input and Accountability –
Promoting Citizen Engagement
2.12 Health Canada should establish a nongovernmental office of citizen health advocacy to coordinate and facilitate input and
participation by the general public into health
policy deliberations, including policies
relating to the Canada Health Infoway.
This office would:
(a) coordinate and facilitate the linking of
community-based voluntary health organizations and health consumer organizations to enable or enhance their capacity
to participate effectively in health and
public policy development; and
(b) constitute an ongoing, stable mechanism
for obtaining reliable and representative
input and feedback from the health
consumer sector.
2.13 The office of citizen health advocacy should
ensure production of assessments and evaluations of health sector activities relating to
the general public. These would include
setting agenda and critiques for report
cards on the performance of health care
programs and services, outcomes of interventions and treatments, and the actual
health impact of health policies (See also
Recommendation 4.2).
3.
Strengthening and Integrating
Health Care Services
Supporting the Health Care Team
3.1 Federal, provincial and territorial governments should develop and test incentives
to encourage and assist health care professionals and providers to adopt health
infostructure applications. These applications
include clinical decision support tools, health
information systems and telehealth.
3.2 Federal, provincial and territorial governments, in collaboration with associations
representing health care professionals and
providers, should provide funding for:
(a) professional education and development
opportunities for health care professionals
and providers across the spectrum of
health care to acquire the skills needed
for optimal use of health information
and communications systems; and
(b) developing, piloting and evaluating tools
to support clinical decision making
across the spectrum of health care.
3.3 Health Canada, in partnership with Human
Resources Development Canada, other
federal departments, provinces and territories, health worker organizations and
health professional associations, should
initiate a labour force strategy to:
(a) ensure the skills and knowledge base
necessary to build, use and support the
Canada Health Infoway are available; and
(b) address labour policy, employment policy
and occupational health and training
issues.
Electronic Health Records
3.4 Patient-based health records are a fundamental cornerstone of provincial and territorial
health infostructures. However, they have
the potential for serious violations of privacy.
The Council believes that, with particular
care, electronic health records can actually
enhance privacy protection, improve patient
care, empower citizens through greater
control of their own health records and
serve as the foundation for an ever-improving information and evidence-based health
system. Consequently, the federal Minister
of Health should work with his provincial
and territorial counterparts to bring about
developments relating to provincial and
territorial health systems that will:
(a) improve patient care by creating provincial
and territorial person-based, electronic
health record systems. These will make
accessible, on a need-to-know basis and
under the control of patients, all relevant
information about their past medical
histories, including conditions and diagnoses, as well as treatments, medications
and other forms of intervention (whether
publicly or privately funded);
(b) provide legislative safeguards against the
use of identifiers for multiple purposes;
(c) improve the security of health records by
exploiting modern technologies such as
encryption, authentication and electronic
logging of all accesses made to a personal
record;
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(d) ensure a transparent and harmonized
approach across the country, in light of
the principles enunciated in the report,
to the conduct of ethical reviews on a
case-by-case basis of proposed health
research projects which require access to
individually identifiable records and
which, for whatever reason, cannot be
conducted on the basis of informed consent by patients. (Such ethical reviews
should assess whether there is a sufficiently substantive public good expected
as a result of a proposed project to
warrant the project and the implied
invasion of privacy.) To these ends, federal, provincial and territorial governments should consider:
(i) establishing an independent oversight
mechanism to ensure that ethical
review panels across the country
operate in a manner consistent with
the principles enunciated in this
report; and/or
(ii) creating, if necessary in their respective
jurisdictions, ethical review panels
which would operate in accordance
with those principles;
Seizing the Telehealth Opportunity
3.6 Federal, provincial and territorial Ministers
of Health should promote the development
of a Canadian strategy for telehealth by
establishing a telehealth task force. This
task force should be composed of representatives of health care professionals and
providers and the full array of health
stakeholders, including the general public.
The mandate of the telehealth task force
should be to:
(a) develop a Canadian strategy for funding
and the integration of telehealth into
health care delivery;
(b) develop technical and professional
standards; and
(c) address issues regarding licensure,
liability and reimbursement of health
care professionals and providers.
3.7 To create a knowledge base for the telehealth
task force and subject to evaluation by that
task force, sufficient funding should be
allocated to Health Canada to:
(e) ensure that the evolving provincial and
territorial health information systems
have a system architecture that makes it
possible to exchange information under
strictly controlled circumstances; and
(f) harmonize provincial and territorial
privacy legislation to ensure that these
objectives are facilitated.
3.5 Health care professionals and providers
and federal, provincial and territorial
health ministries should engage the public
in discussions on the value and use of electronic health records.
(a) develop, in partnership with provincial
and territorial health ministries and associations of health care institutions and
health professionals and providers,
broadly accepted frameworks to assess
the value of telehealth applications to
physicians, health care professionals,
providers and institutions, as well as
the needs of these groups for such
applications;
(b) undertake, in partnership with provincial
and territorial health ministries and
associations of health care professionals,
providers and institutions, pilot and
demonstration telehealth projects as a
means of:
(i) evaluating within broadly accepted
frameworks the costs and effectiveness
of different applications and sets of
applications, and
(ii) defining best practices;
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(c) support national organizations (Canadian
Society for Telehealth, Canadian Institute
for Health Information, Canadian
Network for the Advancement of
Research, Industry and Education, and
others) in their efforts to develop and
implement the national telehealth strategy;
(d) support training for health care
professionals and providers so that they
can fully exploit the potential of
telehealth; and
(e) support research, in conjunction with
key stakeholders and the general public,
on ethical, legal and social issues associated with telehealth.
3.8 To build a sound foundation for a
Canadian telehealth strategy and to
address the basic issues of cross-jurisdictional licensure, reimbursement and
liability, it is vital that:
(a) professional licensing authorities develop
a mechanism of licensure that will allow
interprovincial telehealth consultations;
(b) each provincial and territorial government
develop, and coordinate through the
Federal/Provincial/Territorial Advisory
Committee on Health Services, a telehealth
reimbursement policy that includes
interprovincial payment agreements for
negotiated services, recognizing that:
(i) telehealth services are a legitimate
way to deliver health care,
(ii) practitioners providing these services
should be compensated, and
(iii) reimbursement for services are
currently limited to face-to-face
encounters; and
(c) providers of liability protection, such as
the Canadian Medical Protective
Association and the Canadian Nurses
Protective Society, develop appropriate
liability protection products for medical
practitioners providing telehealth services.
4.
Creating Information Resources
The Health Information Roadmap – An
Action Plan for the 21st Century
4.1 The report, Health Information Roadmap:
Responding to Needs, developed by the
Canadian Institute for Health Information,
Statistics Canada and Health Canada, fully
articulates a plan for the creation of information resources to support accountability
and continuous feedback on factors affecting
the health of Canadians. The federal
Minister of Health should commit the
necessary levels of funding (as detailed in
the report) to ensure – in the context of
stringent privacy safeguards, confidentiality
requirements and data security arrangements – successful implementation of
the plan.
Report Cards on the Health Care
System
4.2 As a key element of the Health Information
Roadmap, the federal Minister of Health
should, in partnership with his federal,
provincial and territorial counterparts and
health stakeholders across Canada, support
evaluative analyses and consensus building
to develop yardsticks and fair measures of
health care system performance and the
health status of Canadians. These analyses
would form a basis for report cards to the
public that will improve the overall
accountability of the health care system.
Need for a National Health
Surveillance Network
4.3 Federal, provincial and territorial Ministers
of Health should collaborate in supporting
the development of a National Health
Surveillance Network that will allow the
timely monitoring of the health of a region,
a province, a territory or the nation as a
whole in a global context.
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5.
(i) provisions regulating secondary uses of
non-identifiable health information,
taking into account the spectrum of
potential identifiability of such
information;
Improving Privacy Protection
Key Legislative Mechanisms
5.1 In harmonizing and strengthening the
protection of personal health information
across jurisdictions, governments should
ensure that their privacy legislation for
health embodies the following mechanisms
and principles:
(j) provisions prohibiting the use of personal
health identifiers for other purposes, to
prevent the potential serious invasions of
privacy attendant upon potential access
to personal health information beyond
the health domain or the combination of
records from several different areas to
assemble a comprehensive profile; and
(a) a clear definition of health information,
broad enough to incorporate health
information collected in public and private
systems and to ensure that equal obligations and penalties apply to both public
and private sectors;
(b) a definition of personal health information, which takes into account the
spectrum of potential identifiability in
the case of health information;
(c) a definition of a custodian or trustee of
personal health information, and a
custodian or trustee’s obligations,
including provisions for ensuring that
these obligations apply equally to private
sector organizations and organizations
acting as an agent or contractor for the
custodian;
(k) provision for remedies in the case of
breaches of privacy.
6.
Developing and Implementing
Compatible Standards
6.1 To strengthen significantly the development
and implementation of standards in health
informatics and telematics, it is necessary
that:
(d) definitions of a guardian (e.g. for a minor
child or a mentally incompetent person)
and of a guardian’s obligations;
(e) a definition of what constitutes informed
consent, as well as a clear statement of
principle to the effect that informed
consent should be the basis for sharing
information;
(f) a precise definition of “exemptions” to
this requirement for informed consent –
specifically provisions that give clear
guidance on how to balance the right of
privacy with the public good for research
purposes;
(g) provisions prohibiting all secondary
commercial use of personal health
information;
(h) provisions setting clear limits on access
and use of health information by third
parties outside the health care system;
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Standards
Paths to Better Health
(a) federal, provincial and territorial governments provide sufficient funding for
standards development in health informatics and telematics to the Canadian
Institute for Health Information (CIHI);
(b) measures be taken to ensure citizen participation in the standards development
process through, for example, the CIHI
partnership initiative;
(c) CIHI achieve a formal process for identifying, ratifying and implementing
standards with federal, provincial and
territorial Deputy Ministers of Health to
ensure buy-in from provinces and
territories at the level of officials;
(d) CIHI play a lead role for Canada with
respect to international standards deliberations in the area of health informatics
and telematics (e.g. ISO TC 215); and
(e) Industry Canada and the Standards
Council of Canada establish a standards
development organization for health
informatics and telematics, based on a
partnership between CIHI and the
Canadian Standards Association.
Testing for Compatibility
6.2 Health Canada should work with the
Canadian Network for the Advancement
of Research, Industry and Education, and
others as appropriate, to ensure that test-bed
facilities are available to analyse the compatibility of new health application
products with other health applications,
including those already being used on
Canadian health networks.
6.3 Health Canada should provide incentives
for provincial and territorial governments
to develop and carry out joint projects that
will refine and resolve compatibility issues
in health networks across Canada.
7.
An Aboriginal Health Infostructure
A Unique Approach to Health
Information
7.1 Health Canada should consider an
Aboriginal Health Infostructure, strategically interconnected to the Canada Health
Infoway, as an autonomous and distinct
institutional development consistent with
Aboriginal interests.
7.2 Health Canada should provide financial
resources for Aboriginal groups to undertake further consultation and communications with governments, private sector
groups and each other to confirm and further
develop the concept of the Aboriginal
Health Infostructure and define plans for
its development and implementation
and/or determine the nature and scope of
Aboriginal participation in the Canada
Health Infoway.
Steps Toward an Aboriginal Health
Infostructure
7.3 Health Canada should ensure that resources
committed and dedicated for capacity
development and training are designated
for Aboriginal people to support the
Aboriginal Health Infostructure and
Aboriginal participation within the Canada
Health Infoway.
7.4 Health Canada in partnership with other
federal departments, should support and
fund the First Nation and Inuit Regional
Longitudinal Health Survey process.
This would enable a sustained, ongoing,
comparable source of First Nation and Inuit
population health information, data collection, research and analysis capacity within
a process validated and supported by First
Nation and Inuit peoples, regionally and
nationally.
7.5 Health Canada should provide additional
resources for the First Nations Health
Information System, but only on a sustainable basis and in the context of developing
a comprehensive Aboriginal Health
Infostructure which will involve a multifaceted, interlinked process involving many
initiatives; some currently under way and
others to be developed.
7.6 Health Canada should take the lead, with
other federal departments, to ensure that the
state of the communication infrastructure in
Aboriginal and non-Aboriginal communities
alike is assessed in order to undertake
technical enhancements to support highspeed data transmission and enable
accessible, affordable and reliable use
of the Canada Health Infoway.
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7.7 Health Canada, in partnership with other
federal departments, should make a sustained commitment to the development of
an economic infrastructure, as it relates to
the development and implementation of
the health infostructure in Aboriginal communities. In doing so, the health infostructure initiative will facilitate employment, career development, capacity building, increased economic development, personal and community income, community
stability, training opportunities and
improvements to the health and social
condition of Aboriginal peoples.
8.
9.
From Promise to Reality
9.1 In partnership with provincial and territorial
ministries of health, Health Canada should:
(a) undertake public awareness and participation campaigns at the community
level to underscore and give a high
profile to the importance of strategic
health infostructure investments;
(b) promote collaboration, information
sharing and mutual learning with
respect to the evaluation of health infostructure initiatives and the benefits to
be derived from them;
Technology Transfer and Public-Private
Sector Collaboration
(c) ensure that all health infostructure projects
and programs demonstrate the relationship of their proposed objectives and
expenditures to the goal of improving or
maintaining the health of Canadians and
that they contain evaluative mechanisms
to that effect; and
Technology Transfer
8.1 Health Canada should take the lead in
developing, in cooperation with provincial
and territorial ministries, other federal
departments, and associations of health care
professionals, providers and institutions, a
process to involve health care professionals,
providers and institutions in:
(a) monitoring technological developments
in Canada and around the world that
may be relevant to delivering health
information and health care services;
(b) gathering, collating, disseminating and
using information from Canada and
around the world on best practices and
evaluations in ways of deploying information and communications technology
in health;
(d) identify and meet national needs that
remain unaddressed by provincial and
territorial health infostructure initiatives.
9.2 In transferring funds to provincial and
territorial governments for health purposes,
the Government of Canada should work
with provincial and territorial governments
to ensure:
(c) promoting, through incentives and other
means, ongoing innovation in using
information and communications
technology to deliver health information
and health care services; and
(d) addressing the human and behavioural
impacts of adopting information and
communications technology in health.
B-8
Canada Health Infoway
A Strategic Investment
Paths to Better Health
(a) allocation of a portion of the funding to
developing provincial and territorial
health infostructures;
(b) mutual collaboration among provinces,
territories and Health Canada on developing the Canada Health Infoway, as
detailed in this report; and
(c) implementing a system for all provincial
and territorial governments to set their
own plans and priorities in the context of
the jointly developed Canada Health
Infoway.
Recommendations from
Interim Report
Recommendation 3
Recommendation 1
All federal, provincial and territorial governments
in Canada should ensure legislation is in place
addressing privacy protection and specifically
aimed at protecting personal health information
through explicit and transparent mechanisms.
Recommendation 2
The Minister of Health should take the lead in
encouraging an accord among provincial, territorial and federal governments to harmonize,
taking into account best practices internationally,
the approaches in their respective jurisdictions
to privacy and the protection of personal health
information around the need to:
(a) certify, in the case of consent for the
release of personal health information,
the conditions of consent and the identity
of the person giving the consent, in addition to authenticating the consent itself;
(b) review, in the case of anonymous data,
whether the data are indeed anonymous
(“non-nominative”) and cannot be linked
back to any individual; and
(c) have ethical review panels established to
weigh, in the case of uses of personal
health information for research purposes
where securing consent is impractical,
the value of privacy against the significance of the public good that might be
achieved by the research.
Canada should develop a strong, national capability for cooperatively managing the development
and adoption of compatible standards in the
areas of health information and telematics,
with strong links to international standards
deliberations.
Recommendation 4
Provincial and territorial governments should
advance or combine their personal identifier
systems in the health area only at such time as
they have:
(a) put in place a legislative framework for
privacy protection specifically designed
to address personal health information;
(b) implemented privacy-enhancing
technologies in their own jurisdictions;
and
(c) ensured the compatibility of their
electronic security infrastructures for
health information in consultation with
their respective privacy commissioners.
Recommendation 5
The federal Minister of Health should:
(a) affirm the critical importance of interoperability, in the context of appropriate
privacy safeguards, to the contribution of
a national health infostructure to
strengthening and integrating health care
services; and
(b) take the lead in gaining the support
of provincial and territorial ministers
for achievement of the level of interoperability required for this purpose.
Recommendation 6
Health Canada should encourage national
collaboration in the formation of a plan for the
development of technical and data standards
that would permit the eventual evolution of a
national health infostructure, keeping in mind
that:
(a) many national priorities may be longerterm elements of the plan; and
(b) other national priorities, such as the integration of services across the spectrum of
care, should have a shorter time horizon.
Canada Health Infoway
Paths to Better Health
B-9
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