Canada's Strategy for Patient-Oriented Research (SPOR) - Patient Engagement in Research is More than a Moral Obligation 11th Annual Brain Injury ...
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Canada’s Strategy for Patient-
Oriented Research (SPOR)
Patient Engagement in Research is More than a Moral Obligation
11th Annual Brain Injury Canada National Conference
September 26, 2014
Jeff Latimer, PhD
Director, Strategic Initiatives Branch
CANADIAN STRENGTHS
Canada Excels In All Health Research Sectors
Clinical Medicine
More Impact
Biology Public Health and
Average Relative Citations (ARC)
Health Services
World Average
Biomedical Research Psychology and
Cognitive Sciences
Less Impact
Less Specialized World Average More Specialized
Specialization Index (SI) 2
Source: The State of Science and Technology in Canada, 2012
CANADIAN STRENGTHS
Strong Intl. Research Collaboration
3
Source: The State of Science and Technology in Canada 2012
CANADIAN CHALLENGES
4
SPOR – A SOLUTION
The Strategy for Patient-Oriented Research - a coalition of
federal, provincial and territorial partners, including
patients, researchers, health practitioners,
provincial/territorial health authorities, policy makers,
academic health centres, charities, and the
pharmaceutical sector, working together to generate
and translate high quality, relevant research into practice.
Patient-oriented research aims to ensure that
the right patient receives the right intervention
at the right time
5EVIDENCE
“The international experience with engaging
citizens and patients in research has shown
that involving them early in the design of
studies, ideally as early as at the planning
stage, leads to better results.”
Methods for Involving Patients in Topic Generation for Patient-Centered Comparative Effectiveness Research, An International Perspective (2012),
6
p.8OFFICIAL LAUNCH
“By putting patients first, we are making sure
that research will have a greater impact on
treatments and services provided in clinics,
hospitals and doctors' offices throughout
Canada, better integration of research
evidence and clinical practice means
improved health outcomes and
a better health-care system in Canada.”
Honourable Leona Aglukkaq, Former Minister of Health
Canadian Medical Association's Annual Meeting
St. John's, Newfoundland
August 22, 2011
7PRINCIPLES
• Patients need to be involved in all aspects of the research to ensure
questions and results are relevant and integrated into practice
• Decision-makers and clinicians need to be involved throughout the
entire research process to ensure integration into policy and
practice
• Funding under SPOR is based on a 1:1 matching formula with non-
federal government partners to ensure relevance and applicability
• Effective patient-oriented research requires a multi-disciplinary
approach
• SPOR is focused on first-in-human research designed to be
transformative in nature and improve patient outcomes and/or the
effectiveness and efficiency of the health care system
• SPOR is outcome driven and incorporates performance
measurement and evaluation as integral components of the initiative
8CORE ELEMENTS
Support for People and Patient-Oriented
Research and Trials (SUPPORT) Units
SPOR Networks
Capacity development
Improving the clinical trials environment
Patient engagement
9SUPPORT UNITS
Provincial/territorial/regional centres providing support and expertise to
those engaged in patient-oriented research
Data Platforms &
Services
Consultation &
Methods Support
Research
& Development
Services
Collective
Priorities
Career Health Systems,
Development in KT &
Methods & HSR Implementation
Real World
Clinical Trials
10NETWORKS
National collaborations of patients, health professionals, decision
makers, health researchers and other stakeholders to generate
evidence and innovations designed to improve patient health and health
care systems
11DEVELOPING CAPACITY
To grow, support and sustain a collaborative, interdisciplinary and
innovative patient-oriented research environment capable of addressing
evolving health care questions, contributing to enhancing patients’
health care experience and improving health outcomes.
12“Some researchers are concerned that while
research organisations are making
involvement a requirement for funding or
support, not all researchers know how to do it
well…..”
Source: TwoCanAssociates Report for Mental Health Research Network (MHRN), March 2012 13PATIENT ENGAGEMENT
Occurs when patients meaningfully and actively collaborate in the governance, priority
setting, and conduct of research, as well as in summarizing, distributing, sharing, and
applying its resulting knowledge
STATUS UPDATE
In response to the SPOR Patient Engagement Framework published in June 2014, the
CIHR Citizen and Patient Engagement Implementation Strategy is introducing a number
of cross-cutting mechanisms across three core areas:
Governance and Capacity Building Tools and Resources
Decision-Making
Ensuring that citizen and patient Ensuring that resources are available Ensure tools and resources are
engagement is embedded in to facilitate the participation of citizens available to citizens and patients to
CIHR programs/processes and patients in CIHR help prepare them to effectively
programs/processes and POR contribute to/participate in CIHR
programs/processes and POR
Ex. Patient and Citizen Ex. Funding opportunities for the
Participant Pool; mechanism to research community and knowledge Ex. Orientation tool for boards and
capture patients and citizens in users to form active collaborations committees; development and roll-
the College of Reviewers; an whereby citizens and patients are out of a training curriculum for
incentives/compensation policy engaged early and often in POR; patients to be engagement in
to compensate citizens and development of a Citizen and Patient research; development of a ‘jargon
patients participating in research Engagement Community of Practice buster’ to explain research termsPATIENT ENGAGEMENT
A culture change and capacity development are needed
• The original impetus for patient engagement in research
was an ethical and moral one – it was the right thing to
do.
• Increasingly, it is being done because it has
measureable impact :
improvement in the credibility of results (higher
enrollment and retention)
directly applicable to patients (by asking pertinent
questions about patient-important outcomes).
Source: Domecq et al. BMC Health Services Research 2014. 14:89
15HOW PATIENTS CONTRIBUTE
Full members Bring the collective
of research voice of an affected
teams community
Specific
skillsets, i.e.,
Experiential ethics,
Identify knowledge
knowledge brokers
and recruit
other
patients
16BARRIERS AND FACILITATORS
to patient engagement in research
Barriers Facilitators
• Lack of clear roles • Research that has a
• Professional resistance patient-driven focus
issues • Experiential knowledge is
• Lack of PE valued as evidence
performance measures
• Tokenistic involvement
• Shared sense of
- limited ‘patient voice’ purpose/outcomes
• Little preparation or • Identifying and promoting
training available about models and approaches
the research process built on ‘partnership’
• Lack of preparation, • Reimburse for time and
time and commitment
effort
17CIHR ENGAGEMENT WITH BIAC
AND ITS COMMUNITY
• Workshop in 2012 co-hosted with the Ontario Neurotrauma
Foundation included BIAC to help focus the research thinking on
more patient-centred approaches on mTBI in youth and
adolescents
• In 2012 a collaboration with the Ontario Neurotrauma Foundation
resulted in the establishment of the Canadian TBI Research and
Clinical Network with both a strong research and patient focus
• Meeting in 2013 of the International Initiative for Traumatic Brain
Injury Research included a session in which individuals with lived
experience presented
• In 2013, 19 grants in the area of mild traumatic brain injury were
funded through partnerships between CIHR and national and
provincial organizations
• Knowledge to Action funding available in partnership with the
Ontario Neurotrauma Foundation
18RELEVANT LINKS
Strategy Development Process:
http://www.cihr-irsc.gc.ca/e/47275.html;
http://www.cihr-irsc.gc.ca/e/45851.html
Publications and Resources:
Http://www.cihr-irsc.gc.ca/e/43752.html
SPOR Patient Engagement:
http://www.cihr-irsc.gc.ca/e/48413.html
YouTube:
http://www.youtube.com/watch?v=L_5Xr8BbEYo
https://www.youtube.com/watch?v=CsXxVKHFp4E
Webcast:
http://www.ktdrr.org/training/webcasts/webcasts14-17/index.html
19DISCUSSION and QUESTIONS?
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