Participant Experience Toolkit

Engaging Patients and the Public

Evidence is growing about how engaging patients and the public as partners on clinical research teams can benefit the research itself. For example, patient and public partners may: identify core outcomes and domains, make suggestions and provide insights so interventions are tailored and delivered with minimal burden to participants, have a positive impact on recruitment and retention (for example, through helping design a study or by sharing it with their networks), help in sharing the results of the research, and more. 

  • If you are engaging patients or public members as partners on a clinical research team, CTO has resources to help you engage them.
  • If you are interested in engaging a specific potential participant community you hope to enrol in a clinical trial, it may be a good idea to spend some time getting to know the potential participant community and their perceptions and attitudes before you plan your clinical trial. For example, knowing how a community feels about trials in general (e.g., based on historical events) or about their potential participation (e.g., number of site visits, whether or not the aspects of the trial may be decentralized, etc.) might lead to a different approach to designing the trial. Designing a trial differently based on input from the community may lead to a better experience for participants.
  • CTO has a whole section on its website related to engaging patients and the public as members of clinical research teams and it can be found here.
  • The Canadian Institutes of Health Research-Institute of Musculoskeletal Health and Arthritis has co-created, with patient partners, a How-To Guide to Patient Engagement in Research. The How-To Guide is a set of four online, self-directed, free modules applicable to any research where patient partners are engaged. The modules are available in English or French, are narrated (which can be turned on or off), and are for any member of a research team. See here for more about this How-To Guide.
  • A toolkit called “Engaging Your Community about Clinical Trials” has been developed as the result of a collaboration between CTO, patient organizations and health charities (the Canadian Breast Cancer Network, Huntington Society of Canada, and the Sickle Cell Awareness Group of Ontario) and the Centre for Implementation Research at the Ottawa Hospital Research Institute. The toolkit outlines a number of considerations, steps, resources, and references to engage a community to better understand what they think about participating in clinical trials.

Note: This resource list is not exhaustive and listing a resource does not denote its endorsement or promotion.