Patient and Community Engagement for Researchers

Background

There is building consensus across funders, researchers, clinicians and people with lived experience on the benefits of patient engagement in research. Visit our patient and community engagement resource site to explore a list of literature and resources available for researchers (below).

CCS currently defines patient engagement as the active partnership with and collaboration between people with lived experience of cancer (patients, survivors, and caregivers) throughout the research or research funding life cycle. CCS’s research strategy includes engagement as one critical approach to improve the relevance and impact of research funding outcomes. In response and in partnership with people with lived experience and researchers, CCS has co-created a patient engagement in research funding strategy. You can read more on the development and details of this strategy here.

One key outcome of the strategy for all researchers: CCS recommends or requires the systematic, meaningful and diverse engagement of people with lived experience in all of our research competitions. This may look different in different competitions and for different pillars of research, however all researchers are required to meet minimum expectations of engagement, below.

Patient Engagement Resources

Visit our patient and community engagement resource site to explore a list of literature and resources available for researchers.

Browse patient engagement resources

Partner with us

People with lived experience can learn more about patient engagement and how they can engage in CCS research funding.

Learn more about being a patient partner at CCS

Community of Practice

Share and learn about patient engagement practices in cancer research by joining the Patient Engagement in Cancer Research Community of Practice.

Learn more about the community of practice

Ways to Engage

There are different ways that researchers can engage people with lived experience in research. CCS uses the following model, co-developed with people with lived experience and researchers.

Inform	Consult	Co-Create	Lead
Share information such as research or dissemination plans	Seek input from people with lived experience	Build trusting partnerships with people with lived experience to identify issues, co-develop and implement solutions	Support the leadership of people with lived experience to take action and implement solutions
Examples: Research results, reports, and presentations	Examples: Surveys, interviews, focus groups	Examples: Participating in meetings and decision-making with an equal vote	Examples: Leadership in resource creation or knowledge translation

CCS recommends engagement most often be consulting, co-creating or leadership-based, with different research and research competitions requiring different ways of engaging. Check the Request for Application of the competition you are applying to for more details.

Engagement Expectations

CCS has minimum expectations for engagement. We require that engagement be meaningful, systematic, and diverse. These expectations are in line with the PCORI Foundational Expectations for Partnership.

Meaningful - Engagement should be mutually respectful, non-tokenistic, and considerate of ways to engage. More often, engagement should be an exchange with people with lived experience.

Examples:

Co-design patient partner roles with people with lived experience and describe expectations for every role on the team in a Terms of Reference or other document
Offer fair compensation for lived expertise
Include input from more than one person with lived experience

Systematic - People with lived experience should be involved in the research from day one – in planning, conducting research and in dissemination.

Examples:

See PCORI, SPOR and Spears, 2021 for examples on engaging people with lived experience in the different stages and different pillars of research
Visit our Engagement Resource Site for Researchers for more examples, tools and learnings

Diverse - Engagement should reflect the diversity of the community or population of focus both on the research team and in the research plan.

Examples:

(Coming Soon) Visit our Indigenous Partnerships Resource site
Invest in learning such as San’yas, ICCU, or Health Research BC Diversity Tapestry
Put together a list of crisis lines and local trauma-informed resources, following guidelines such as from the CMA Trauma-Informed Engagement site
Consider how you can modify processes to reduce barriers to participation – language and format used for your recruitment and research materials, flexibility of roles, feedback, and meetings, compensation and supports