Patient and community engagement for researchers
Why engage patients and other community members?
Examples of how patient and community engagement in research can have impact include:
- Aligning research questions and outcomes to patient and community priorities (see 1)
- Developing and choosing patient-relevant communication, surveys and tools (see 2 )
- Supporting recruitment and dissemination (see 1 ,3 ,4) to improve research reach and success
- Creating culturally appropriate and sensitive communication and flagging issues, for example in consent forms or other communication (see 2 )
- Involvement has been shown to be beneficial even in preclinical laboratory research (see 5)
- In the right circumstances (see 6), patient partners can help centre research and care on patient priorities. There are also examples of what to avoid (see 7) so that engagement is meaningful and non-tokenistic (see 8)
- Establishing discussion groups as a distinct activity for patient engagement (see 9)
- Specific recommendations for anti-racist patient engagement of adolescents and young adults diagnosed with cancer (see 10)
Basic science patient and community engagement resources
If you are looking for fundamental training or learning resources on engagement, consider the CIHR IMHA patient engagement training modules, or other webinars offered by your provincial / territorial SPOR unit. These are relevant for all researchers regardless of whether your research pillar is basic or clinical. If you are looking to connect with patient partners, contact your local SPOR unit, or email us at research@cancer.ca.
We are working to add more resources and supports for basic scientists. Check back here again or email us!
There is research to support the benefit of patient engagement in basic science:
Connor et al 2023 provide a practical example of patient engagement in lab-based research, and the benefits from the patient and researcher perspectives.
Spears 2021, Figure 2 lists the ways that patients can meaningfully engage in laboratory research in conception, conduct, and completion of research projects.
Fox et al 2021 review patient engagement within pre-clinical settings, to provide examples of what is currently being done.
- Watch a two-part presentation of Dr. Manoj Lalu, Dr. Dawn Richards and Grace Fox discussing the results of their research in more detail: View part 1 View part 2
Maccarthy et al 2019 include a planning canvas for incorporating patient engagement in basic biomedical research.
Provincial and territorial patient and community engagement resources
The Alberta SPOR Unit (AbSPORU) provides the province’s health research community with expertise, training and resources for patient-oriented research.
Equip Tool – Health Service Evaluation Tool
Evaluating Quality and ImPlementation (EQUIP) is an interactive visual tool for anyone building an evaluation that incorporates the Alberta Quality Matrix for Health (AQMH) and helps teams ask the right questions and use appropriate measurements to evaluate their implementation efforts.
The BC SPOR Support Unit offers researchers resources to conduct and implement high-quality patient-oriented research, such as patient engagement plans that cover recruiting, training and supporting patients on a research team and letters of support for research proposals.
REACH BC - Patient-Researcher Matching
Reach BC offers researchers employed by BC Health Authorities, Universities and Research Institutes a place to share their research and recruit volunteers and patient partners.
Island Health (Vancouver Island) - Patient-Researcher Matching
Island Health (Vancouver Island) connects researchers with patients and families and supports them to work together as partners throughout the research process.
BC Patient Safety & Quality Council
A patient partner-approved guide to authentic patient engagement. This shares the principles and essentials of patient engagement and provides a six-step guide to authentic patient engagement.
The George & Fay Yee Centre for Healthcare Innovation (CHI)
The George & Fay Yee Centre for Healthcare Innovation (CHI) acts as Manitoba’s SPOR SUPPORT Unit and offers educational options such as group training and webinars for patient engagement, guides for patient engagement in research plans, and resources for trauma-informed and inclusive engagement, and Patient-reported measurement (PRM) training and support.
Knowledge Nudge – CHI Patient Engagement Blog
Knowledge Nudge is a CHI educational blog that focuses on knowledge translation (KT) and patient engagement (PE) from a health research and healthcare perspective, including an eight-part introduction to patient engagement.
The Maritime SPOR SUPPORT Unit (MSSU) brings together the New Brunswick, Nova Scotia and Prince Edward Island research and patient communities and provides research consultations, training, resources, and administrative data to support patient-oriented research.
Newfoundland & Labrador SPOR SUPPORT Unit
Newfoundland and Labradors SPOR SUPPORT Unit provide expertise, resources and training in knowledge translation, patient engagement, patient-oriented research, and research methodologies for researchers, patients, clinicians and policymakers.
Institute for Circumpolar Research - SPOR SUPPORT Unit
The Northwest Territories SPOR Network fosters partnerships to develop northern health knowledge and capacity through training and development of primary care databases for research; Evaluating integrated service delivery models; Developing culturally appropriate frameworks for care; Exploring the scope of practice of health professionals working in extended roles.
Hotıì ts’eeda Northwest Territories SPOR SUPPORT Unit
Hotıì ts’eeda is a SPOR SUPPORT Unit hosted by the Tłı̨chǫ Government and Northwest Territories (NWT) Indigenous Governments. Hotıì ts’eeda offers research support by connecting community members, organizations, and researchers involved in NWT health and health researchers with Indigenous organizations to develop a culturally competent health system.
Ontario SPOR SUPPORT Unit is a network of 14 health Research centres and 8 Research initiatives that offer infrastructure, expertise, resources and support to people engaged in patient-oriented research and promote knowledge exchange of research evidence.
Quebec's SPOR Support Unit (SSA Quebec) offers services and resources such as implementation support, assistance recruiting patient partners, education opportunities and process and outcome evaluations to institutions, organizations, decision-makers and staff working in health care, research and social services.
Centre of Excellence on Partnership with Patients and the Public
Centre of Excellence on Partnership with Patients and the Public (CEPPP) offers the Patient and Public Partnership (PPP) platform, which provides training for patients and researchers on effective partnership relationships, advice for grant applications, budget planning, patient recruitment, implementation and evaluation support.
Saskatchewan Centre for Patient-Oriented Research - SPOR SUPPORT Unit
Saskatchewan Centre for Patient-Oriented Research (SCPOR) is a partnership of organizations that supports patient-oriented research by helping patients get involved in research, support researchers meaningful collaboration with patients, and providing training and development opportunities.
SCPOR Patient & Researcher Connection Site
SCPOR offers researchers a place to post opportunities for patient partners, participate in research studies and other patient-oriented opportunities in the research community.
Yukon University Strategy for Patient-Oriented Research - SPOR SUPPORT Unit
The Yukon Strategy for Patient-Oriented Research (YSPOR) supports health research done in partnership with people with lived experience in the Yukon by informing, consulting, involving, collaborating, and empowering patients and community members in the research process.
General patient and community engagement resources
An article on how patient-driven research can accelerate knowledge production, using rare diseases as the example.