Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts
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Published on: January 12, 2018
David Lessard1,2,3, Kim Engler1,2,3, Serge Vicente3,4
1Chronic and Viral Illness Service (CVIS), McGill University Health Centre (MUHC), Montreal, Canada.
Abstract:
Patient engagement (PE) promotes collaboration between stakeholders (researchers, patients, clinicians, etc). It often faces challenges due to tensions between its ethical/political and scientific underpinnings. This article explores how stakeholders applied the guiding principles of a PE project ("co-build," "support and mutual respect," and "inclusiveness") for an HIV clinical research program initiated in January 2016. Three researchers/clinicians, a PE agent, and 2 patients held 3 meetings (June-October 2018) to discuss challenges faced and how these impacted their approach to PE. Regular stakeholder discussions about PE in clinical research could be documented and help guide PE to better meet stakeholder needs.
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