SPOR Refresh: What are we looking at?

Strengths and challenges for the SPOR program overall

SPOR is guided by two ambitious goals: to embed patient, caregiver and community perspectives and priorities in health research and to speed up the use of evidence in health policies, health services, health experiences and health outcomes. A major focus of the strategy has been to build the knowledge, skills and capacity of researchers, patients, and community members to work together toward these goals.

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  The successes of the program can be measured against these goals. Some of the program's important successes include:

  • Capacity in SPOR has been developed as evidenced by patient engagement training opportunities offered across SPOR core elements and by trainees involved in SPOR research. For example, between 2016-2020, SPOR-funded groups reported that they offered over 10,000 training activities to over 100,000 trainees, community members and patients.
  • The result has been a culture shift in health research, with clear growth in patient and community involvement in health research beyond projects funded through SPOR.
  • SPOR has also been successful in supporting effective partnerships between researchers, different levels of government, clinical and other stakeholders.
  • A recent evaluation found that SPOR funded research is cited in policy, guidelines, and government reports at 2.7 times the global average.

  At the same time, challenges persist in fully reaching SPOR's goals. Some challenges the community has identified include:

  • Tokenism still exists, with some researchers treating patient, community, or stakeholder involvement as a box to check rather than an ongoing partnership. This likely reduces the relevance of research to patients, communities, policymakers and clinicians and others, and may limit its impact on heath policy and health services.
  • Health research faces equity, diversity, and inclusion challenges, and this is also true of SPOR. Historically excluded groups continue to be underrepresented among SPOR researchers and the patients and communities actively partnering in research. Some have said that the focus on 'patients' is a barrier as many communities don't identify with this term.
  • While the are many individual examples of impact and evidence that SPOR-funded research is used in policy documents and guidelines, it is harder to identify SPOR's overall impact on health policies, health services, health care experiences and health outcomes of Canadians.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

Important trends and emerging needs of the future

As health needs and health systems continue to evolve, SPOR needs to be flexible and adapt to changing circumstances. New technologies, evolving population health needs and events like the COVID-19 pandemic have brought many changes that a renewed Strategy for Patient-Oriented Research may want to focus on.

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  Due to the COVID-19 pandemic, policy and practice improvements, and changes in patient, community and provider needs, the health and research landscape continue to evolve.

  • Changes in patient, community, and provider needs:
    • Inequities in health access, experiences, and outcomes: While health inequities—unnecessary and unjust differences in access to health care, health experiences and health outcomes—have long existed, the pandemic exposed and exacerbated existing inequities in our health systems.
    • Misinformation: The spread of misinformation is threatening trust in science and making it harder for communities to sort evidence from false information.
    • Intersection of climate and health: Health harms from climate change are occurring at an increased scale and frequency. Due to inequitable resourcing and exposure, some communities are more vulnerable to these changes than others.
  • Changes in how health care is delivered:
    • Health human resources: The current health human resources crisis has negatively impacted access, quality and efficiency of health care while increasing vulnerability and pressure on health care providers.
    • Advances in technology and virtual care: The adoption of technology and virtual care has expanded to many aspects of health care, which has allowed providers to work more efficiently while offering patients convenience and shorter wait times.
    • Artificial intelligence (AI): The incorporation of AI in health care and health research is forecast to grow over the next decade. From predicting outcomes to efficient and accurate diagnostics to enhanced patient engagement and data analysis, AI technologies are a promising trend in health care and research.
  • Policy and practice improvements:
    • Implementation of the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP): In 2021, the United Nations Declaration on the Rights of Indigenous Peoples Act received royal assent, which means that all Canadian laws must become consistent with UNDRIP. UNDRIP provides a roadmap for lasting reconciliation, healing, collaboration and promotes greater equity and prosperity for Indigenous Peoples.
    • Pan-Canadian Health Data Strategy: The pandemic highlighted the importance of centralizing public health and health care data. Access to reliable, timely and accurate health data can improve health outcomes, enhance collaboration between health care providers, guide investments in health care, support adequate responses to health emergencies and forecast health conditions and trends.
    • Move towards Open Science: The push for open and transparent science to improve access to evidence and accelerate the translation of research findings into practice may lead to greater societal impact.
    • Culture shift in health research: Patient-oriented research is growing with clear increases in patient and community involvement in health research beyond projects funded through SPOR.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

Delivering on Truth and Reconciliation Commission (TRC) Calls to Action and accelerating First Nations, Inuit, and Métis (Indigenous) self-determination in health research through SPOR

Patient-oriented research is founded on principles that support people and communities to determine their research needs, set their priorities and direct research methods and efforts to spread what is learned through research. Patient-oriented research is aligned with Indigenous self-determination in health research when it is directed by and remains accountable to Indigenous communities and governments.

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  Everyone in Canada can help play a role in meeting the TRC's Calls to Action. Building on relationships with Indigenous partners and communities that have been developed within SPOR, there is an opportunity for a renewed SPOR program to contribute further to advancing the TRC Calls to Action and UNDRIP which stipulate that research must be determined, controlled, and directed by Indigenous communities.

  Indigenous health researchers and community members have identified a number of challenges for Indigenous self-determination in health research in general. These include:

  • Institutional structures and policies such as institutional eligibility and peer review may create a barrier for some Indigenous communities to access research funding.
  • Lack of consistent and flexible funding continues to interrupt the progress of building health research capacity in some Indigenous communities and promote dependence on larger institutions to meet research needs. Limited research capacity in turn limits Indigenous communities from applying to and holding research funding, continuing an ongoing cycle.
  • Lack of trust due to historical and ongoing harms, exploitive research, systemic racism, and lack of cultural safety leading to reluctance to participate in research for some Indigenous communities.

  In addition, although it is now a requirement for all major SPOR funding opportunities, SPOR-funded teams have had varying levels of success in their efforts to develop meaningful, culturally safe and mutually beneficial partnerships with Indigenous health researchers and communities.

  Indigenous health researchers, community members and SPOR funded entities, including SUPPORT Units, have been engaging in conversations to identify what needs to be done to champion and promote Indigenous self-determination in health research. Proposals include:

  • Providing guidance on the implementation of UNDRIP for health researchers, policy makers and health care providers.
  • Although it can take a long time to achieve, shifting health research decision-making authority to Indigenous governments and communities is an important accelerator of Indigenous self-determination in health research.
  • Strengthening institutional policies and practices to facilitate self-determination and build on Indigenous strengths.
  • Increasing community-led health research projects and ensure Indigenous communities set their own research priorities, ethics, methods, and knowledge mobilization.
  • Eliminating barriers to equitable and consistent funding to Indigenous researchers and communities.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

Strengthening Equity, Diversity and Inclusion, Accessibility and Anti-Racism (EDIA) in Patient Engagement and Patient-Oriented Research (POR)

CIHR has implemented a range of activities to promote equity, diversity, and inclusion in the research system, but there is more work to be done. In 2018, CIHR joined the Natural Sciences and Engineering Research Council of Canada (NSERC) and the Social Sciences and Humanities Research Council (SSHRC), under the leadership of the Canada Research Coordinating Committee, to launch the Tri-Agency Equity, Diversity and Inclusion Action Plan. This plan describes how the federal research funding agencies will make access to funding opportunities more equal for all researchers. It also promotes inclusion in post-secondary research. CIHR made changes to the Project Grant competition. These changes increase access for women, early career researchers and people applying in French. CIHR provides guidance to reviewers to mitigate gender, anti-Indigenous and other biases in peer review. In 2022, it launched the Research Excellence, Diversity, and Independence award to support researchers from underrepresented groups. To build on these initiatives, CIHR is currently developing an action plan on anti-racism and an-other on accessibility and systemic ableism.

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  Why EDIA?

  It was a priority identified by Canadians.

  In 2021, CIHR conducted a series of discussions with Canadians to learn their views on future priorities in POR. These discussions revealed that most respondents thought that POR needs to focus on making sure health inequities (related to race, ethnicity, religion, citizenship status, language, age, gender, sexual orientation, and location in remote/rural areas) are addressed and reduced.

  Inadequate EDIA may limit research impact and application while reinforcing health inequities.

  The lack of diversity within POR may lead to research that doesn't fully represent the priorities, needs and experiences of those accessing the health care system. This limits the ability of policymakers to generalize results beyond the groups involved in the research process and reinforces inequities in health care. Furthermore, engaging diverse groups in research can help strengthen relationships, promote trust, and support capacity building for members of historically equity-denied communities.

  What we have heard so far

  The research community has identified challenges and barriers to incorporating EDIA including:

  • Certain people are more likely to face barriers to participating in research, including people impacted by racism, people with disabilities, members of the 2SLGBTQAI+ community, people with low health literacy and people experiencing homelessness. There is a need for more tools and methods that support meaningful engagement with underrepresented communities.
  • Some researchers are hesitant to incorporate EDIA in POR due to:
    • A lack of understanding of how to apply EDIA principles to their daily work.
    • Beliefs that it is complicated and costly in terms of both time and resources.
    • A lack of diversity within their own teams or few personal connections to underrepresented communities.
  • Researchers from underrepresented and equity-denied groups also face barriers to research, which in turn may impact what research is conducted, who conducts it and how patients are involved. For example:
    • Low funding success for specific research topics, including race, racism, and health, could mean less traction for researching topics of greatest priority to patients.
    • Inaccessible research environments including academic institutions may repeatedly require proof of disability in order to access support or may not widely communicate types of support available. This creates a barrier to researchers and patients alike.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

Building Capacity and Partnering for Excellence in Patient-Oriented Research (POR)

Building capacity in POR among all relevant stakeholders including patients, practitioners, organizational leaders, policymakers, researchers, and research funders has always been a core part of SPOR.

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  As defined by the SPOR Capacity Development Framework, patient-oriented research capacity means:

  • Patients have the capability and support to meaningfully contribute to and participate in research.
  • The health research enterprise supports viable career paths for patient-oriented researchers and health professionals.
  • All participants in POR receive the proper training and support.
  • Patients, researchers, health practitioners, administrators, and policymakers work collaboratively towards common goals.
  • Relevant and transformative knowledge is generated and applied to improve health outcomes.

  SPOR has worked to build capacity for patient-oriented research in a number of ways by developing learning opportunities and other mechanisms for researchers, patients, and community partners. For example, since the program's inception, all SPOR-funded entities have had requirements to create environments to host trainees and researchers, provide training and awards, and to develop skills, knowledge, relationships and infrastructure to support POR. CIHR has also funded training awards such as the Transition to Leadership Stream and Health System Stream to support the development of the patient-oriented research leaders of tomorrow. Awardees are developing and mastering important skills of collaboration, both with people using health services, and with health system decisionmakers.

  Finally, in March 2021, SPOR funded a National Training Entity called Passerelle that builds on the work that SPOR has achieved over the last 10 years. Passerelle serves as a central body for systematic training of POR leaders and serves as a community-building enterprise in the domain of capacity development.

  Along with these successes, the research community has also identified challenges and opportunities when it comes to building capacity.

  Challenges:

  • Efforts to monitor and evaluate capacity-building initiatives are lacking and must be strengthened to ensure effectiveness and progress towards desired outcomes.
  • Current training and capacity efforts generally target researchers and may not be accessible to the broader POR community including patients.
  • Health research is rapidly evolving, complex, interdisciplinary, and global.
  • Patients, trainees, researchers, health care professionals, and health system decision makers all have different learning needs. As such, capacity building efforts need to align with the diversity in needs and priorities.

  Strengths and future directions:

  • As the vast majority of PhDs and fellows do not secure a tenure-track position, there is an opportunity for PhDs to apply their scholarship and talent to lead innovation across different sectors of Canada's research ecosystem.
  • Positioning future trainees as ‘research leaders of tomorrow' who can lead high-impact, multidisciplinary research in a rapidly evolving environment of advancing technologies and global collaboration.
  • A future SPOR strategy could focus on building a cohesive approach to supporting and enhancing patient partnership including strengthening patient capacity for engagement. This can include developing training activities specifically targeting patient partners that align with their needs and priorities.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

How to Strengthen Collaboration with Policy and Health System Decision-Makers to Increase Research Impact

Over the past four decades, researchers have been writing about the health research-policy gap. Integrating and communicating research findings into health policy and service delivery has been an ongoing challenge. One way to address this challenge is to create partnerships based on learning and collaboration between researchers and decision-makers. Together, they can embark on co-developed research that makes research more relevant and actionable, positioning it for more rapid uptake in health policy and in health care.

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  Collaborations and Research Uptake and Impact in SPOR

  An evaluation of SPOR suggests that it has made progress in strengthening collaborations with policymakers and health services to increase research impact. For example, many SPOR-funded entities report informing policies and participating at decision-making tables including policy networks, boards and advisory groups. Further, several SPOR-funded projects have achieved impacts in primary care reform, cost avoidance, and re-design of services. Others have generated relevant and timely knowledge products, which have influenced practice, policy, and public health guidelines. In fact, SPOR funded research has been cited in policy documents at approximately 2.7 times the global average.

  Assessing the impacts of all SPOR collaborations has been a challenge. Certain collaborations within the SPOR ecosystem have been inconsistent or not as successful. For example, over the last few years, SPOR has been operating below the level of awareness of senior leadership in some provinces and territories. Additionally, at the time of SPOR's 2023 evaluation, there was little evidence to demonstrate that SPOR's collaborations with policy and health system decision-makers has contributed to the improvement of patient health care experiences, health outcomes or health system outcomes. This could be because it was too early to expect such improvements from SPOR-funded research as it can take as long as 20 years for change to take place in the health system.

  The research community has identified facilitators, challenges, and barriers to successful collaboration with policymakers and health services to increase research impact. These include:

  Factors for Successful Collaboration

  1. Meaningful partnerships and research co-production: The SPOR community has reported that investing time and energy in relationship-building facilitates interaction between researchers and policy makers and provides opportunities for policymakers to co-develop research questions, which fosters greater research impact. Some have suggested the “P” in SPOR could be changed from “Patient” to “Partnership” to highlight this reality.
  2. Ongoing communication and a clear articulation of expectations and responsibilities: Establishing clear communication channels to convey and clarify roles and responsibilities, ensure all parties are working towards common endpoints and expectations, and establishing a clear set of measures to track progress and expected outcomes can support positive collaboration experiences and better inform decision making.
  3. Targeted, tailored approaches to improving accessibility of research: To improve research impact and uptake, research finding must be communicated in language to be easily understood and applied by decision makers. Some SUPPORT Units have found success in using Learning Health System terminology when communicating with policymakers, while others have used the language of quality improvement. Furthermore, partners have suggested funding for rapid evidence reviews, and training for researchers to effectively present evidence for different audiences can support meaningful collaborations.
  4. 1:1 Matching formula: Policy and decision makers are more likely to follow and apply research findings if they have invested funding and time in them.

  Challenges and Barriers to Successful Collaboration

  1. Lack of Evaluation of Collaboration Techniques: Assessing the impact that research evidence has on policy is complex. Further, few collaborative efforts between researcher and policy makers have been evaluated to assess effectiveness and generalizability.
  2. Time and Capacity Constraints: Establishing, strengthening, and maintaining partnerships is time consuming. For example, one SPOR SUPPORT Unit shared that it could take up to 6 months to set up a meeting with policy makers. Similarly, capacity constraints may limit the implementation of new knowledge and opportunities for engagement.
  3. Variation of evidence needs: Due to differences in aims and applications of evidence, researchers and policymakers may participate differently within engagement activities. For example, researchers often explore clearly defined, narrow questions to ensure rigor, while policy and decision makers assess a policy problem in its entirety, through various narratives and complexities.
  4. Research evidence is not communicated as practical and actionable: The most recent SPOR Evaluation found that only 14% of SPOR knowledge products were considered ready for real-world application based on the Delphi panel of experts for the Knowledge Readiness Level assessment.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

Strengthening SPOR's Governance

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 re-search. The SPOR Refresh process is an opportunity to develop governance structures that better reflect this collective ownership. Renewing governance structures for SPOR, with de-fined 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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  SPOR National Steering Committee (NSC)

  When SPOR was launched in 2011, a SPOR National Steering Committee (NSC) was established to oversee the development and implementation of SPOR. The committee was co-chaired by the Deputy Minister of the Ontario Ministry of Health and Long-Term Care and the President of CIHR. Members included two patients, federal/provincial/territorial government representatives, provincial health research funders, academic institutions, health care organizations, researchers, health charities and industry. The National Steering Committee did not include representation of Indigenous Peoples. SPOR's NSC has not met since 2018; since then, CIHR has been engaging in bilateral conversations with SPOR partners and stakeholders. SPOR's most recent evaluation revealed that the NSC generally provided advice rather than steering the SPOR program. Despite this, members viewed the NSC found the meetings to be useful and an overall positive experience.

  Evaluation of SPOR's Existing Governance Structures

  SPOR's most recent evaluation revealed that many found SPOR's current governance structures confusing, absent, or problematic, particularly since the NSC stopped meeting. It also indicated that the lack of representation of patients and partners in SPOR governance was a critical issue, particularly for a program with a goal to include the active collaboration of patients, providers, researchers, and decision-makers. Further, some partners have expressed concerns both in how they were engaged in decision making and, on the time and resources, required to participate in ongoing governance tables. Given their financial contributions to SPOR, many provinces would like to be more involved in setting SPOR research priorities and ensuring that evidence from SPOR research is presented in a way that is suitable for policy and decision makers in the provinces and territories.

  Collective Impact Model

  A governance approach that has been discussed by some in the SPOR community is the collective impact model. Collective impact models move beyond collaboration and require longstanding commitment and investment from various partners to work towards a common goal, in this case patient-oriented research. Collective impact brings people and organizations together to:

  1. Create a common vision and agenda: involved organizations and stakeholders must share a common understanding of an issue and mutual agreement on goals, and solutions.
  2. Establish a shared measurement system: A clear set of measures to track progress and expected outcomes must be established to ensure efforts remain aligned, and the group learns from successes and failures.
  3. Foster mutually reinforcing activities: Efforts and action plans within collective impacts must be coordinated and mutually reinforced by a shared action plan.
  4. Encourage open and continuous communication: Open and continuous communication efforts foster trust and commitment to the mutual agenda and goals.
  5. Establish a backbone organization: Collective impact requires a centralized infrastructure organization that coordinates efforts and activities. This role could be fulfilled by CIHR or another partner.

  Interested in sharing your perspectives on this issue? Engage with others on it on our engagement platform.

Date modified:

2024-01-05