These patient engagement resources were created to:
- help patients understand the research world
- help patients understand how they can partner in research
- provide tools to understand and evaluate the patient experience
The Patients as Partners in Research team, Ms. Alies Maybee while working at Patients Canada, developed patient engagement resources based on the experiences and knowledge of patients and family caregivers who have been partners on health research teams.
Preparing for discussions
These Guidelines for Patient Partnership in Health Research will help prepare patients for initial discussions with research teams and the Principal Investigator (PI). Patient and caregivers on a research team have a role in planning the project, even if the project is quite well-defined when patients join the team.
Citizens Partnering in Health Research
Introduction to the world of research
The Citizens Partnering in Health Research presentation will help patients and caregivers orient themselves to the world of research. As new partners on health research teams, patients and caregiver partners are exposed to new language and terminology, new processes, protocols and more. The presentation covers why patients should be involved, what it means to partner in research, and how to understand the project and their roles.
Patient Engagement Evaluation Tools
Understanding the patient experience
Patients and researchers can use these surveys to evaluate their experiences with patient partnership throughout a research project (initial, mid-project and end-of-project stages) to understand how the partnership evolves. The surveys provide examples of questions and concerns that patient/caregiver partners have when engaged in research and also reflect questions about the actions of researchers who support patient/caregiver partners in research.
Additional Patient-Engagement Resources
- CIHR Patient Engagement Framework
- Centre for Excellence on Partnership with Patients and the Public
- Hatching Ideas Lab Patient engagement organizations
- Healthy Debate
- Patients Canada