The Patient Engagement Resource Centre is funded by the INSPIRE-Primary Health Care Research Network

of the Ontario SPOR (Strategy for Patient Oriented Research) SUPPORT Unit (OSSU).

FRAMEWORKS

Study Conduct

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. 

LITERATURE

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?

1. Patient Engagement in Research: A systematic Review
2.  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

3. 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.
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4. 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.

PRESENTATIONS

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.