Recommendations from the SPOR Governance and Strategy Refresh Steering Committee’s Final Report

Context

Since its inception in 2011, Canada's Strategy for Patient-Oriented Research (SPOR) has worked to embed the priorities of people and communities into health research, and to embed patient-oriented research evidence into policy and practice, to improve health experiences and outcomes.

Recognizing that much has changed in our health systems and health research ecosystem, CIHR and SPOR partners conducted a pan-Canadian engagement in 2023-24 to invite feedback on what is working well and what might need to change to ensure that the SPOR research investment is aligned with evolving health system and health research realities while reflecting the priorities of people and communities with lived experience, researchers, and health system decision makers.

What We Heard

This pan-Canadian conversation affirmed the need for ongoing, targeted investment in research that prioritizes the experiences of people and communities with lived experience, with a view to improving health policy, health services, health experiences and health outcomes. It also highlighted the need for SPOR to evolve, including its name, to better reflect its focus on inclusion, partnerships, and its broader relevance to people-centred and community-driven research. It emphasized the need to deepen SPOR’s relevance to current health challenges, including the aftermath of the COVID-19 pandemic, the current health human resources and primary care crises, changing population demographics, the impact of social determinants of health, the need for Indigenous reconciliation, and the health impacts of climate change. It also highlighted the need for focused effort to address ongoing health inequities experienced by people identifying as Black, Indigenous, as having a disability, living rural and remote areas, and other underrepresented groups.

The Challenge Ahead

SPOR’s gains of the last decade are at risk given the persistent challenges and significant new headwinds facing health policy and care. People and communities that continue to face inequities in our current health systems have reason to be skeptical that research will address their needs and help to create change. Increased pressures in health systems often mean that health leaders are focused on solving problems of today, with limited time and resources available to co-develop, test, implement and scale-up patient and community driven-research evidence, innovations and solutions for tomorrow.

A Refreshed SPOR: Four Key Objectives with Actionable Recommendations

As a pan-Canadian research investment strategy focused on people and partner-driven health research, the refreshed Strategy for People-Centred and Partnership-Oriented Research (formerly Strategy for Patient-Oriented Research) can and must be a vector that contributes evidence, innovation, and solutions to the real problems facing people, communities and health systems today.

We believe the way to do this is to focus a refreshed SPOR on four key objectives, each supported by actionable recommendations, that focus people-centred and partnership-oriented health research to tangibly address today’s pressing challenges.

Strategic Objective 1: Strengthen community, and partner- oriented research and advance health equity by developing research agendas and research evidence that matter to a greater diversity of people and communities – particularly those that have been historically harmed by or excluded from research.

• Recommendation 1: Rename Canada’s Strategy for Patient-Oriented Research to Strategy for People-Centred and Partnership Oriented Research.

  This renaming reflects the evolution of SPOR's objectives and its commitment to inclusion, partnership, and shared ownership.

• Recommendation 2: Ensure people and communities with lived experience are supported to meaningfully partner in research design, leadership, and decision making.

  1. Co-design and implement protocols and guidelines outlining the roles and responsibilities of partners in people-centred and partner-oriented research while strengthening guidance on appropriate recognition, reciprocity and compensation for people with lived experience.
  2. Co-develop and implement initiatives to raise awareness of people-centred and partner-oriented research among people and communities with lived experience and policy/decision makers. This should include regular social media outreach, and partnerships with healthcare and patient advocacy organizations to utilize existing communication channels.
  3. Co-develop tools and resources to address power imbalances and promote equitable, meaningful partnerships including diverse recruitment and engagement strategies rooted in trust and reciprocity.
  4. Establish a national platform led by people with lived experience from diverse populations to facilitate communication, mentorship, and the exchange of knowledge between people with lived experience and community members engaged in research.
  5. Broaden allowable costs to cover wellness and accessibility needs, plain-language adaptations of research outputs and by advocating for tax exemption for people with lived experience in research.
  6. Expand partnerships across sectors such as education, justice, social services, and those responsible for the physical environment (e.g., urban planning, housing, transportation, parks, and environmental conservation) and climate action (e.g., energy, environmental protection, and agriculture) to ensure health research addresses broader determinants of health and root causes of inequities contributing to health disparities. Recognize that many of these sectors operate across multiple levels of government and require coordinated approaches.
• Recommendation 3: Support and build capacity in underrepresented communities to conduct and co-lead health research in safe, respectful, and reciprocal ways.

  1. Partner to co-develop and apply national guidance on conducting respectful, high-quality research that advances reciprocity and advances reconciliation.
  2. Enhance capacity within the health research community to meaningfully and reciprocally partner with members of underrepresented communities and people with lived experience.
  3. Provide research funding, capacity, and support directly to communities experiencing health inequities (especially northern, rural, and remote communities) to address community health research priorities.
  4. Promote partnerships across sectors, such as social services, education, and justice, to build a cross-sectoral response to health inequities, recognizing that health disparities often stem from intersecting social systems.
• Recommendation 4: Support First Nations, Inuit, and Métis (Indigenous) communities’ self-determination in health research to address the unique priorities of their communities while acknowledging differences in capacity, operations, and needs.

  1. Provide research funding to community-based organizations to better address the health priorities of Indigenous communities.
  2. Invest in education, training, and capacity-building for health research within Indigenous communities to accelerate Indigenous self-determination, leadership, and autonomy.
  3. Continue building and deepening reciprocal partnerships and relationships among First Nations, Inuit, and Métis community leaders and non-Indigenous community members, health services and health care professionals, health research funders, and researchers at national, provincial, territorial, and local levels.
  4. Invest in and support non-Indigenous health researchers to strengthen understanding and respect for distinction-based Indigenous epistemologies, culturally safe engagement and partnership, and Indigenous ways of knowing.

Strategic Objective 2: Support health policy and health delivery systems to adapt and evolve, by integrating people and community- oriented research more directly into efforts that improve health care access, safety and quality (including learning health systems), and that drive health-system transformation.

• Recommendation 5: Fund patient-oriented research as an integrated component of learning health systems and broader efforts to improve health care access, safety and quality, and drive health system transformation.

  1. Invest in integrated, applied research partnerships and embed research teams and researchers in local health systems, regional health authorities, F/P/T policy/decision makers, universities, people with lived experience, and health charities.
  2. Invest in rapid-cycle research, including building researcher and health system partners’ capacity in agile research methodologies, and establishing flexible funding opportunities that support fast-tracked projects.
  3. Create responsive mechanisms that link research agendas with current policy priorities, to address pressing health issues.
  4. Support health system and policy partners in approaches that integrate patient-oriented research evidence into policy, service delivery and clinical practice.

Strategic Objective 3: Create better health experiences and outcomes by advancing the use of people-centred and partner-oriented research findings, insights and effective interventions that address individual and community health priorities, within and across jurisdictions.

• Recommendation 6: Invest in knowledge mobilization (KM) best practices that account for local contexts, cultures, and jurisdictions, that facilitate ongoing exchange and learning, and that accelerate the uptake of evidence in health policy and delivery.

  1. Invest in the co-development and implementation of effective, culturally safe and accessible KM efforts that facilitate knowledge exchange and shares best practices with communities and practitioners.
  2. Develop and enhance the capacity of researchers, people and communities with lived experience, First Nations, Inuit and Métis and underrepresented communities to build KM capacity, foster KM culture, engage policy and decision makers and effectively present evidence in a way that meets their needs.
  3. Fund accessible KM platforms and knowledge broker positions to bridge the gap between researchers, health decision-makers, and care practitioners. Enhance and leverage these positions and existing KM platforms to ensure continuous use, adaptation, and the practical application of findings to inform health policy, innovation, clinical guidelines and standards.
  4. Invest in spread and scale initiatives to expand the reach and impact of patient-oriented research findings, insights, and effective interventions, ensuring accessible and collaborative approaches that enhance relevance and broaden access to validated practices.
  5. Create targeted opportunities for researchers, people with lived experience, healthcare practitioners, and policymakers involved in patient-oriented research KM to network, exchange knowledge, access tools and training, and collaborate to support the sustained application of effective KM.

Strategic Objective 4: Sustain and grow people-centred and partner-oriented research through enhanced governance and by evolving other enablers beyond governance such as funding models, capacity-building mechanisms, and institutional policies, to ensure long-term sustainability and meaningful partnership with people and communities with lived experience.

• Recommendation 7: Establish a governance framework for SPOR that includes a diversity of people with lived experience and other SPOR partners, and promotes collective impact, shared leadership, and accountability.

  1. Create a coordinating governance body that represents multiple perspectives involved in SPOR, builds consensus on shared priorities and advises CIHR and other SPOR partners on major research investments for the strategy.
  2. Develop structured working groups and mechanisms to empower people with lived experience and other partners in shaping SPOR priorities and governance decisions.
  3. Launch a National Coordinating Centre (NCC) as the operational and strategic hub, facilitating collaboration, knowledge mobilization, and synergy across SPOR-funded entities and broader initiatives. As a part of its mandate, the NCC will maintain this report as a living document, incorporating ongoing feedback to adapt SPOR activities to evolving needs and priorities.
  4. Establish clear reporting and evaluation criteria to ensure accountability to the strategic objectives and collective impact principles, with regular progress monitoring and outcomes reporting. These criteria should include indicators and evaluation approaches that are meaningful and relevant to all partners, including First Nations, Inuit, and Métis partners.
  5. Progress towards a collective impact approach by enhancing cross-sector partnerships, reducing redundancies, and strengthening coordination.
• Recommendation 8: Address barriers and support enablers to people-centred and partner-oriented research within the research ecosystem.

  1. Establish robust and harmonized evaluation strategies co-designed with people with lived experience, including First Nations, Inuit and Métis community members and members of underrepresented communities. These strategies should include measurable objectives, timelines, metrics, and evaluation criteria to monitor progress and ensure accountability.
  2. Fund and support cross-jurisdictional, patient-oriented research through improved data linkages, data sharing, analytics, and data management, ensuring that these processes respect Indigenous data sovereignty, working in partnership with Indigenous communities to develop culturally appropriate data governance frameworks.
  3. Address institutional barriers within funding agencies that impede patient-oriented research, including administrative barriers and peer review processes.
  4. Revise institutional eligibility criteria and establish flexible funding streams to allow community-based organizations and Indigenous organizations to directly apply for and administer research funding.
  5. Develop partnerships to identify and address barriers to advancing patient-oriented research within the research ecosystem, including evolving tenure policies and research ethics processes to better support POR.

The Path Forward

These recommendations are grounded in promising practices and pathways to impact identified by members of the SPOR community in the pan-Canadian engagement activities.

Importantly, these recommendations are intended to be led and actioned collectively by SPOR partners, reinforcing their essential role in advancing research that improves health experiences and outcomes. They are designed to ensure that the needs and priorities of people and communities with lived experience remain the core drivers of the strategy, moving beyond participation to true partnership in shaping research, policy, and practice.

The SPOR Refresh Steering Committee invites SPOR partners to reflect on these recommendations and their individual and joint commitments for advancing people-centered and partnership-oriented research across Canada.

Date modified:

2025-03-20