Mapping Patient Engagement

    Catalogue of Organizations that offer patient engagement in research


    • Ontario has a large and complex health care and health research system, which is increasingly becoming aware of the need to engage patients, caregivers, and family members in their activities. The objective of partnering with patients is to improve the relevance and translation of research into practice and policy and ensure that the research reflects their needs. Patient engagement in research is now a part of many types of organizations including: research institutions, health care centres, government organizations and not-for-profit organizations.
    • The Ontario SPOR SUPPORT Unit (OSSU) commissioned the Knowledge Translation (KT) Program of St. Michael’s Hospital-Unity Health Toronto to develop a catalogue of organizations in Ontario that currently have activities and policies for patient engagement in research, including accounts of patient partner experiences in those engagement processes.
    • From March to August 2019, we collected information regarding patient engagement through surveys, semi-structured interviews, and document reviews.
    • The results of this activity are presented in this catalogue and include:
      • A brief description of each organization and their research themes, patient engagement objectives, research activities, patient engagement approaches, and patient engagement highlights informed by interviews with organizational staff and patient partners.
      • A summary of survey responses of patients’ and organizational employees’ experiences in the patient engagement process.
      • A set of recommendations for organizations interested in incorporating patient engagement in research.
    • This first edition includes 14 entries that represent diverse organizational processes for patient engagement in research including their objectives, research activities, engagement methods, and successful outcomes. We are aware that there are many other organizations and patient engagement activities not currently identified in this catalogue and welcome suggestions about how this catalogue can be expanded. Please send any suggestions or comments to We encourage you to share this document with others who are interested in patient engagement in research.


    Who is this done for?

    Ontario SPOR Support Unit

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    Date : 11 Dec 2019