Patient and community engagement for researchers

a woman is speaking with her doctor who has placed their hand on her shoulder

Why engage patients and other community members?

Engaging people affected by cancer and other community members in research and funding decisions is a core approach of the Canadian Cancer Society’s (CCS) research strategy. Patient and community engagement allows people with cancer, families, caregivers, and those most likely to implement the research to add their own expertise and experiences. Research projects have the potential to be more relevant and impactful if there is meaningful and active collaboration in setting priorities, conducting research, and communicating results.
a woman is speaking with her doctor who has placed their hand on her shoulder

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)
CCS recommends or requires the meaningful engagement of patients or other community members in most of our funding opportunities. See our current funding opportunities for more information.

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

We are working to add more resources and supports for basic scientists. Check back here again or email us! 

A webinar on engaging knowledge users in basic science: tips tricks and lessons learned.

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.

A video by the Blueprint Translational Research Group at the Ottawa Hospital Research Institute on different methods to engage patient partners in lab-based (basic science) research.

Provincial and territorial patient and community engagement resources

Undertaking meaningful engagement requires some planning and preparation. If you need help with your patient or community engagement, consult your local Strategy for Patient-Oriented Research (SPOR) support unit. SPOR support units offer resources, tools, learning, and one-on-one consultation (offerings vary for each unit). See below for a list of these support units and other 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.

Maritimes SPOR SUPPORT Unit

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.

CHIR is working with partners in Nunavut to launch a SPOR SUPPORT unit. For more information or updates you can contact Amy Caughey or visit CIHR's SPOR News Page.


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.

 Unité de soutien SSA Québec

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.

CCS co-created a patient engagement in research strategy with patients, survivors, caregivers and researchers
CIHR IMHA offers a four-part training module on the basics of patient engagement for patient partners, researchers, trainees and other research team members and additional patient engagement resources such as an interactive online engagement tool. 
CIHR Strategy for Patient-Oriented Research (SPOR) website offers information on the strategy for patient-oriented research, funding and facilitation, provincial and territorial SUPPORT Units, patient engagement, news, and supporting framework to guide SPOR stakeholders.  
Clinical Trials Ontario provides resources and tools to support engagement in clinical trials.
A toolkit to support the application of health equity to research.
The Health Canada Policy toolkit for public involvement in decision-making provides a clear purpose, objectives and understanding of when, where and how to use citizen engagement and a policy framework and guidelines that clarify departmental expectations for Health Canada employees.
Evaluate and measure patient engagement activities using a range of tools.
Many different resources for researchers for patient and public involvement.
The patient and public engagement evaluation toolkit assists in evaluating Patient and Public Engagement in healthcare and health research by providing 27 resources that can be sorted by the context of engagement (health research or health care), level of measurement at the organization, project or participation level.
Newfoundland and Labrador SPOR SUPPORT Unit's Patient and Public Engagement Planning template includes 10 planning component checklists to assist with developing Patient Engagement plans for health research and other projects.
An updated searchable list of publications on engagement in health research. Resources are sortable by article topic, types of community members engaged, measuring and evaluating engagement and phase(s) of research in which engagement occurred, from identifying research questions to sharing study results.
A Start-to-Finish guide to building and navigating partnerships. This learning module on partnership development for knowledge mobilization explains how to develop strong, effective partnerships with community members for knowledge exchange and real-world application of research.
A range of resources for supporting patient engagement in research including a planning template, recommendations for patient involvement and questions that a patient reviewer will consider when reviewing applications.
A collection of resources such as templates and guidance documents for research teams on patient engagement.
A framework for meaningful engagement including principles and enablers.
This is not an exhaustive list of all engagement supports for researchers. If you have further questions on patient and community engagement related to CCS, please email