{"id":407,"date":"2022-10-19T14:52:58","date_gmt":"2022-10-19T21:52:58","guid":{"rendered":"https:\/\/blogs.ubc.ca\/imhablog\/?p=407"},"modified":"2023-07-10T13:17:02","modified_gmt":"2023-07-10T20:17:02","slug":"imhas-patient-engagement-research-ambassadors-journey-to-developing-a-how-to-guide-to-patient-engagement-in-research","status":"publish","type":"post","link":"https:\/\/blogs.ubc.ca\/imhablog\/2022\/10\/19\/imhas-patient-engagement-research-ambassadors-journey-to-developing-a-how-to-guide-to-patient-engagement-in-research\/","title":{"rendered":"IMHA\u2019s Patient Engagement Research Ambassadors\u2019 Journey to Developing \u201cA How-to-Guide to Patient Engagement in Research\u201d"},"content":{"rendered":"

Le fran\u00e7ais suit \/ French follows<\/em><\/p>\n

In May 2020, IMHA convened its Patient Engagement Research Ambassadors (PERA)<\/a> with a mandate to: inform IMHA and CIHR of patient priorities in research; inform their own communities about IMHA, CIHR and work with PERA; advocate to benchmark best practice in patient-oriented research (POR) across IMHA\u2019s activities; curate quality POR assets for IMHA and the CIHR community; create new POR assets; and evaluate the progress of<\/p>\n

PERA. PERA quickly established a collegial approach and monthly meetings. Over that summer, the group defined its main priority and then over the next two years, developed the materials for this priority. This is the story of how PERA did so.<\/p>\n

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Patient partners identified a patient engagement in research gap and set a work priority<\/strong><\/p>\n

Over the summer of 2020, PERA members got to know each other and members of the IMHA team, met monthly with each meeting\u2019s agenda including a combination of information sharing, capacity building (about research, IMHA and CIHR and patient engagement in research), and discussions about experiences in patient engagement. Invited guest speakers from the IMHA community included a researcher and a trainee who spoke about different topics, provided their perspectives, and participated in conversations with PERA.<\/p>\n

During these meetings, a \u2018parking lot\u2019 was built and by the fall, a list of priorities emerged. The group agreed that its main priority was to fill the gap for practical tools and resources to help people do patient engagement (PE) in research and to advance patient engagement in research. IMHA provided consultant funding, honoraria, and staff time.<\/p>\n

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Patient partners drove the work – with their lived experience<\/strong><\/p>\n

Over the course of the next two years, each monthly PERA meeting included a discussion about what these PE in research resources would look like, what topics would be covered, and what information was most appropriate for different audiences.<\/p>\n

All PERA members played an integral role in informing the work based on their own experiences as people living with a variety of conditions and who have had different experiences with research and research studies. The discussion around modules allowed PERA members to recognize and hold space for the ways in which patients are often ignored or tokenized in research settings. The group developed clear criteria for the PE resources that it would create. Material would be encouraging in tone, accessible, offered free of charge, available in English and French, and importantly, based on their own experiences. One PERA member drove the work between PERA meetings and made sure the momentum continued between the meetings.<\/p>\n

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The results: Democratizing PE in research training<\/strong><\/p>\n

The result of PERA\u2019s work is IMHA\u2019s \u201cA How-to-Guide to Patient Engagement in Research\u201d – a set of four modules, designed for anyone who is involved in patient engagement in research. The modules are:<\/p>\n