1. International Association for Public Participation (IAP2)
The IAP2 is commonly cited and describes a continuum of participation from the public. In general, movement from left to right on the continuum denotes greater participation.
2. CIHR Citizen Engagement Framework
This framework, adopted from Health Canada, describes the 5 levels of patient engagement in research.
1. Bird, M., Ouellette, C., Whitmore, C., Li, L., Nair, K., McGillion, M.H., Yost, J., Banfield, L., Campbell, E., Carroll, S.L., 2020. Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research. Health Expect. https://doi.org/10.1111/hex.13040
2. Di Lorito, C., Godfrey, M., Dunlop, M., Bosco, A., Pollock, K., van der Wardt, V., Harwood, R.H., 2020. Adding to the knowledge on Patient and Public Involvement: Reflections from an experience of co-research with carers of people with dementia. Health Expect. https://doi.org/10.1111/hex.13049
3. Gelkopf, M.J., Avramov, I., Baddeliyanage, R., Ristevski, I., Johnson, S.A., Flegg, K., Dimaras, H., 2020. The Canadian retinoblastoma research advisory board: a framework for patient engagement. Res Involv Engagem 6, 7. https://doi.org/10.1186/s40900-020-0177-8
4. Patient Engagement in Research: A systematic Review
This systematic review by Domecq et al. (2014) the authors aimed to answer 4 key questions:
a. What are the best ways to identify patient representatives?
b. How to engage patients in designing and conducting research?
c. What are the observed benefits of patient engagement?
d. What are the harms and barriers of patient engagement?
5. Engagement of people with lived experience in primary care research: Living with HIV Innovation Team Community Scholar Program
Dr. Claire Kendall and her research team recommend the adoption of a community scholar (i.e type of patient engagement) approach to research by research teams. This paper concludes that such an approach provides a formal structure to enhance the participation of patients with lived experience, and supports meaningful engagement through the provision of a clear understanding of roles and expectations
6. Collins, M, Long, R, Page, A, Popay, J, Lobban, F. Using the Public Involvement Impact Assessment Framework to assess the impact of public involvement in a mental health research context: A reflective case study. Health Expect. 2018; 21: 950– 963.
7. Schwartz, A. E, Kramer, J. M, Cohn, E. S., & McDonald, K. E. “That Felt Like Real Engagement”: Fostering and Maintaining Inclusive Research Collaborations With Individuals With Intellectual Disability. Qualitative Health Research. 0(0), 1049732319869620.
8. Collaborative health research partnerships: a survey of researcher and knowledge-user attitudes and perceptions.
9. Bedwell, C., Lavender, T., 2020. Giving patients a voice: implementing patient and public involvement to strengthen research in sub-Saharan Africa. J Epidemiol Community Health.
10. Coupe, N., Mathieson, A., 2020. Patient and public involvement in doctoral research: Impact, resources and recommendations. Health Expect 23, 125–136.
Presentations we have delivered about patient engagement in research 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.
Online Patient Engagement Resource Hubs
The following websites offer searchable databases of resources related to patient engagement. Please click on the links below to access them.