1. Canadian Institute of Health Research: Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework
The SPOR Patient Engagement Framework is designed to establish concepts, principles and areas for patient engagement to be adopted by all SPOR partners.
These briefing notes explains the different ways in which members of the public are involved in research. They will help you to plan, resource and support public involvement in your research. The briefing notes for researchers link to a larger online resource for researchers on how to involve members of the public in research.
1. INVOLVE Briefing Notes for Researchers: Why involve patients and community members in health research?
2. Partnering with citizens in Research: What's helpful from our perspective?
Patient advisors with Patients Canada released a guide entitled "Partnering with Citizens in Research: What's helpful from our perspective?. This downloadable PDF document addresses general questions to define patient engagement in health research, the benefits of engagement, key considerations, and suggestions about how to involve patients in various aspects of your research project
3. Recruiting patients as partners in health research: A qualitative descriptive study.
4. Dukhanin, V., Feeser, S., Berkowitz, S.A., DeCamp, M., 2020. Who represents me? A patient-derived model of patient engagement via patient and family advisory councils (PFACs). Health Expect 23, 148–158.
5. Ho, S.S., Looi, J., Leung, Y.W., Goh, T.J., 2020. Public engagement by researchers of different disciplines in Singapore: A qualitative comparison of macro- and meso-level concerns. Public Underst Sci 29,
6. Sand, A.-S., Grimsgaard, S., Pettersen, I., 2020. Patient and public involvement in health research: A Nordic perspective. Scand J Public Health 48, 119–121.
7. The Patient Experience in Ontario 2020: What Is Possible?
Please click on the link below to access the resource.
When applying for research grants, funders such as CIHR's SPOR will be looking to ensure that funds have been thoughtfully allocated to promote inclusive and meaningful patient engagement. The Knowledge Nudge provides suggestions for consideration when building a comprehensive engagement budget including: compensation for time, energy, and expertise, transportation, caregiving, audio/visual equipment, accessibility of spaces, etc.
Canada’s Strategy for Patient-Oriented Research (SPOR) encourages researchers and research partners to offer payment to patients who act as partners in research and research-related activities. Offering payment to patients who undertake this important work helps make participation in research more equitable and diverse by helping to remove barriers to participation in research.
Presentations we have delivered about getting started with patient engagement and information about the Patient Engagement Resource Centre is available for download below. We ask that you please acknowledge the INSPIRE-PHC Patient Engagement Resource Centre for Primary Health Care Research if you use these presentations, and let us know about your work.