Lessard David, Engler Kim, Vicente Serge, Bilodeau Martin, Lebouché Bertrand
Chronic and Viral Illness Service (CVIS), McGill University Health Centre (MUHC), Montreal, Canada.
Centre for Health Outcomes Research and Evaluation (CORE), Research Institute of the McGill University Health Centre (RI-MUHC), Montreal, Canada.
J Patient Exp. 2020 Dec;7(6):925-930. doi: 10.1177/2374373520975728. Epub 2020 Nov 25.
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.
患者参与（PE）促进了利益相关者（研究人员、患者、临床医生等）之间的合作。由于其伦理/政治基础与科学基础之间的矛盾，它常常面临挑战。本文探讨了利益相关者如何将一个患者参与项目的指导原则（“共同构建”、“支持与相互尊重”以及“包容性”）应用于2016年1月启动的一项艾滋病毒临床研究项目。三名研究人员/临床医生、一名患者参与代理人以及两名患者举行了三次会议（2018年6月至10月），以讨论所面临的挑战以及这些挑战如何影响他们对患者参与的处理方式。关于临床研究中患者参与的定期利益相关者讨论可以记录下来，并有助于指导患者参与更好地满足利益相关者的需求。
