Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts

David Lessard; Kim Engler; Serge Vicente; Martin Bilodeau; Bertrand Lebouché

doi:10.1177/2374373520975728

Challenges of Patient Engagement in an HIV Clinical Research Program: A Qualitative Analysis of Stakeholder Accounts

J Patient Exp. 2020 Dec;7(6):925-930. doi: 10.1177/2374373520975728. Epub 2020 Nov 25.

Authors

David Lessard^{1

2

3}, Kim Engler^{1

2

3}, Serge Vicente^{3

4}, Martin Bilodeau^{3

5}, Bertrand Lebouché^{1

2

3

6}

Affiliations

¹ Chronic and Viral Illness Service (CVIS), McGill University Health Centre (MUHC), Montreal, Canada.
² Centre for Health Outcomes Research and Evaluation (CORE), Research Institute of the McGill University Health Centre (RI-MUHC), Montreal, Canada.
³ Canadian Institutes of Health Research Strategy for Patient-Oriented Research (CIHR/SPOR) Mentorship Chair in Innovative Clinical Trials in HIV, Montreal, Canada.
⁴ Department of Mathematics and Statistics, Université de Montréal, Montreal, Canada.
⁵ Ontario AIDS Network, Positive Leadership Development Institute (PLDI), Toronto, Canada.
⁶ Department of Family Medicine, McGill University, 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.

Keywords: Patient Advisory Councils; methods; patient engagement; patient perspectives/narratives; qualitative; team communication.