Have your say: Help us improve patient-oriented research in Canada

This Discussion Forum outlines seven key themes for SPOR's Refresh, covering topics from strengths and challenges to important trends in health care and health research and emerging needs for the future. Discussion questions are provided under each theme to help get the conversation going.

Click on the Go To Discussion button to view the theme and share your comments on that theme. You are also welcome to interact with other respondents by asking your own questions and/or responding to their comments.

Since it was launched almost a decade ago, SPOR has had important successes, and at the same time, there continue to be challenges that a renewed strategy can try to address.

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• What do you consider to be SPOR's most significant strengths so far?
• What challenges has SPOR encountered that need to be addressed for the program to evolve successfully?

Since the launch of Canada’s SPOR almost a decade ago, much has changed in our health systems and the health research ecosystem. A renewed SPOR strategy can prepare for upcoming trends while reflecting evolving health, community, partner, and patient and caregiver priorities.

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• What emerging trends in health care and research do you see as most important for the future of SPOR?
• Are there specific technological, economic, environmental, or other trends/advancements or policy shifts that SPOR should prepare for to stay ahead?

SPOR is aligned with efforts to advance Indigenous self-determination in health and research in accordance with the Truth and Reconciliation Commission's (TRC) Calls to Action and the United Nations Declaration of the Rights of Indigenous Peoples (UNDRIP). Since 2019, major SPOR funding opportunities have included requirements to support Indigenous self-determination in research.

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• How can SPOR build foundational trust with Indigenous communities while acknowledging past and current harms?
• What current SPOR initiatives or best practices have proven effective in supporting Indigenous self-determination in health research?
• What changes in the funding process would make SPOR programs more accessible and equitable for Indigenous communities and support delivering on Truth and Reconciliation Commission Calls to Action?

Since its launch, SPOR has been guided by patient partners whose knowledge and lived experience have influenced the direction and outcomes of research and improved knowledge mobilization. While this has brought important perspectives into research, current patient engagement and patient-oriented research activities do not involve the diversity of the Canadian population or address the full range of the population’s health research needs. As such, the impact, relevance, and benefit of SPOR research is impacted. Strengthening EDIA in POR and SPOR is both a challenge and an opportunity.

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• Where is POR successfully engaging diverse groups, particularly people from equity-denied communities? Are there important lessons for other SPOR initiatives?
• How can CIHR and other SPOR partners work together to enhance accountability and engagement with equity-denied groups in SPOR-funded initiatives?

SPOR has always fostered the development of knowledge, skillsets, and system capacities that are increasingly important in supporting the growth and success of Canada’s research community, including patient, caregiver, and community partners. SPOR aims to improve Canada’s capacity to attract, train and mentor professionals and researchers, and create sustainable career paths in POR.

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• What are the strengths and challenges of SPOR’s capacity building initiatives?
• Where are focused efforts needed to build capacity in patient-oriented research?
• In what ways could collaboration across SPOR-funded groups be improved to support capacity building?
• How can monitoring and evaluation of capacity building initiatives be strengthened?

POR, through SPOR, is key to addressing the need for evidence-informed health care in Canada. We invite you to share your ideas for what a refreshed SPOR can do to strengthen collaboration with policymakers and health services to increase research impact.

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• What key elements of SPOR that support successful collaboration between SPOR and policymakers should be sustained or strengthened?
• How can SPOR support research to be more actionable for policy and health system decision-makers?
• What challenges do SPOR and policymakers face in collaborating effectively, and what design elements of SPOR could help to overcome these challenges?

The vision for SPOR is that it is a strategy that belongs to communities across Canada—and this has been reflected by many patient, community, government, academic, charitable and industry partners who have come together to co-invest time and resources in patient-oriented research. The SPOR Refresh process is an opportunity to develop governance structures that better reflect this collective ownership. Renewing governance structures for SPOR, with defined roles and responsibilities, including better representation from patients, Indigenous Peoples, partners, and funders, will strengthen collaboration and ensure decision-making on SPOR reflects the priorities and realities of all partners.

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• What governance models have proven effective in similar initiatives, and could they be applied to SPOR?
• How can SPOR ensure transparency and accountability in its governance structure?
• What would facilitate patients and community members playing a stronger role in the governance of SPOR?