Patient and stakeholder engagement for researchers

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

Why engage patients and other stakeholders?

Engaging people affected by cancer and other stakeholders in research and funding decisions is a core approach of the Canadian Cancer Society’s (CCS) research strategy. Patient and stakeholder 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 stakeholder engagement in research can have impact include:

  • aligning research questions and outcomes to patient and stakeholder 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 )
CCS recommends or requires the meaningful engagement of patients or other stakeholders in most of our funding opportunities. See our current funding opportunities for more information.

Patient and stakeholder engagement resources

Undertaking meaningful engagement requires some planning and preparation. If you need help with your patient or stakeholder 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.
This is not an exhaustive list of all engagement supports for researchers. If you have further questions on patient and stakeholder engagement related to CCS, please email research@cancer.ca.