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Appendix H
Discussion Paper1
Canadian Strategy on Patient-
Oriented Research
Jean L. Rouleau, Institute of Circulatory and Respiratory Health,
Canadian Institutes of Health and Research; Penny Moody-Corbett,
Strategy on Patient-Oriented Research,
Canadian Institutes of Health and Research2
In Canada, as elsewhere, the translation of health research outcomes
to development of products and services for health care and final imple -
mentation in patients does not progress as rapidly, efficiently, or success-
fully as it should. In order to address this problem, Canada has embarked
on a bold new strategy to improve health care and health care delivery
based on evidence from research outcomes and integration of knowledge
to the policy makers and users. The Strategy on Patient-Oriented Research
(SPOR) is a pan-Canadian program involving health researchers and pro-
fessionals, policy makers, and patients. It is a partnership led by a national
steering committee which is co-chaired by the president of the Canadian
Institutes of Health Research, the leading funder of health research in
Canada, and the president and chief scientific officer of the University
Health Network, one of Canada’s leading hospitals and research insti -
tutes, and includes membership from all levels of government, the private
1 The views expressed in this discussion paper are those of the authors and not necessarily
of the authors’ organizations or of the Institute of Medicine. The paper is intended to help
inform and stimulate discussion. It has not been subjected to the review procedures of the
Institute of Medicine and is not a report of the Institute of Medicine or of the National
Research Council.
2 Participants in the activities of the IOM Forum on Drug Discovery, Development, and
Translation. This discussion paper is based on a submission to the Forum’s November 2011
workshop, Envisioning a Transformed Clinical Trials Enterprise in the United States: Estab -
lishing an Agenda for 2020, to inform the workshop discussions surrounding international
case studies in the area of clinical research transformation.
203
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204 ENVISIONING A TRANSFORMED CLINICAL TRIALS ENTERPRISE
sector, health charities, health science networks, universities, and patient
advocacy. The goal of the Canadian patient-oriented research strategy is
to improve health outcomes and enhance patient’s health care experience
based on translation of research outcomes into the health care system.
The Strategy consists of four major objectives:
1. Improvement of the human health research environment and
infrastructure.
2. Establishment of mechanisms to better train and mentor health
professionals and non-clinicians in health research.
3. Improvement of organizational, regulatory, and financial support
for multisite studies.
4. Integration of best practices into the health care system.
In order to improve the human research environment and infrastruc-
ture in Canada, SPOR will help develop specialized Patient-Oriented
Research Networks (hereafter, Networks) and specialized research service
centers referred to as Support for People and Patient-Oriented Research
and Trials (SUPPORT) units. The Networks will be led by a team of princi-
pal investigators with internationally recognized research credentials and
health systems/delivery expertise. The Networks will be national in scope
and will bring together a unified group to build a critical mass of techni -
cal and scientific expertise to provide research leadership in an effort to
improve the delivery of care through the development and validation of
health care interventions. The Networks will be focused in specialty areas
of national importance (e.g., mental health, community-based primary
health care, etc.) as judged by the national steering committee, and the
Networks will work with international partners to generate evidence on
best practices for patient care in the community. Through mentoring and
training, the Networks will provide the tools for the next generation of
health researchers to better integrate research with improved health care
and health care delivery.
In order to ensure nationally distributed health research services and
expertise, SUPPORT units will be developed and housed in each of the
provinces or regions of the country. The SUPPORT units will provide
the personnel and infrastructure to support large-scale multi-site national
and international studies involving patients and/or patient records. The
units will themselves be centres of research excellence and opportunity,
provided through senior research chairs with specializations in areas such
as health research methodologies, health systems research, and knowl-
edge translation. The SUPPORT units will include people with exper-
tise to design, analyze, and manage large-scale, multisite studies (e.g.,
biostatisticians, epidemiologists, health economists, etc.). The SUPPORT
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205
APPENDIX H
units will offer consultation services for the research community which
will be provided by qualified personnel and trainees who will gain practi-
cal experience in this work environment while providing support to the
research community. Expertise from the SUPPORT units will be available
for local and regional health initiatives. Nationally, the SPOR initiative
will ensure common approaches for SUPPORT units across the country
and thereby enhance the ability of Canadian researchers to engage in large
national studies, such as those initiated by the SPOR Networks (see Fig -
ure 1). It is anticipated that the SUPPORT units will be recognized inter-
nationally as an access point to the Canadian patient-centered research
community.
Health researchers and policy developers recognize the advantages
as well as the challenges of doing research in Canada. As in other inter-
national jurisdictions, it is acknowledged that complex organizational,
regulatory, and financial support for clinical and health research can act
as barriers to effective research or implementation of research outcomes.
In order to address these areas, SPOR has established external advisory
committees that will provide specific direction or guidance for improved
or coordinated national activities. For example, over the past 6 months,
Canada has embarked on a common contracts pilot program facilitated
by the Canadian Institutes of Health Research, Rx&D (the umbrella orga -
nization for the Canadian pharmaceutical industry) and the Association
of Canadian Academic Healthcare Organizations. External advisory com-
mittees have been established to address topics that will simplify and
focus clinical research reporting and develop more flexible and adaptive
protocols; streamline the process of research ethics review, in particular
for multisite studies, and provide appropriate infrastructure and access
for the rich source of population and administrative data and electronic
records in Canada. In addition, an external advisory committee exists to
develop a strategy for students and young scholars, both clinical and non-
clinical, wishing to pursue careers in the field of patient-oriented research.
The success of initiatives like SPOR in resolving the multiple chal-
lenges facing patient-oriented research in Canada relies upon many fac-
tors, some of which are specific to Canada. SPOR has three characteris-
tics that, although present in other national and international initiatives,
have perhaps received greater attention in Canada’s initiative. First, all
programs require partnerships and buy-in from the community in order
to assure alignment of all stakeholders and to optimize coherence and
impact. Partners include federal and provincial governments, academic
institutions such as academic health science networks, universities and
institutes, life science industries, charities, funding agencies and, indeed,
all health research–related stakeholders. Second, in order to optimize
coherence and impact, the SPOR program is a comprehensive one that
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206 ENVISIONING A TRANSFORMED CLINICAL TRIALS ENTERPRISE
attempts to cluster the multiple challenges and solutions facing patient-
oriented research under one umbrella. And third, SPOR proposes a major
focus on developing clinical research efforts addressing the needs for
improving the quality and efficiency of our health care system.
RESEARCH NETWORKS
Data Management
Biostatistics and Methods Support
CORE
Mental Health Research Network
FUNCTIONS Project Management
Primary Care Research Network
Consultation and Education
Research Network #3
Research Network #4
Knowledge Translation
Health Systems Research
SPECIALIZED
MODULES Biobanks, Cohorts, Working with
Administrative Databases,
Electronic Medical Records
Large International Trials
FIGURE 1 Relationship between SUPPORT units and Research Networks: When
combined, SUPPORT units will provide the infrastructure and skills for highly
specialized Research Networks to identify and tackle key clinical questions. The
primary focus of Research Networks #3 and #4 has not yet been decided by
R02159
the national steering committee.
Figure H-1
vector, editable
