Nicholas Angl Emily, Laur Celia, Strange Michael, Sklar Barbara, Tadrous Mina, Ivers Noah
ENA Consulting, Toronto, ON, Canada.
Women's College Hospital Institute for Health System Solutions and Virtual Care, 76 Grenville Street, Toronto, ON, Canada.
Res Involv Engagem. 2024 Feb 9;10(1):22. doi: 10.1186/s40900-024-00552-8.
Involvement of individuals with lived experience, also called "patient partners", is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year implementation study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). LEAs were involved throughout the study, including developing patient-facing recruitment material, informing the analysis of results, and as a regular reminder of the real-world impact of this work. However, through regular critical reflection, we acknowledged that we were still uncertain how to articulate the impact of LEA involvement. As a team, we continually discussed why and how people with lived experience were involved in this study. We probed ill-defined concepts such as "patient perspective", which was particularly complex for a study focused on changing physician behaviour with indirect impact on patients. This critical reflection strengthened trust and rapport between team members (characteristics deemed essential to meaningful patient involvement), while underscoring the value of including concerted time to explore the muddier aspects of engagement. In short, patient engagement did not proceed as smoothly as planned. We advocate that "best practices" in the engagement of people with lived experience include regularly setting aside time outside of practical study tasks to interrogate complex aspects of patient engagement, including reflecting on how and why individuals with lived experience are involved.
让有实际生活经验的人（也称为“患者伙伴”）参与进来，是实施科学（即研究如何将证据付诸实践的学科）的一个关键要素。在开展一项为期4年的以改善医生阿片类药物处方管理为重点的实施研究时，我们的研究团队与实际生活经验顾问（LEA）密切合作。LEA参与了整个研究过程，包括编写面向患者的招募材料、为结果分析提供信息，以及不断提醒这项工作对现实世界的影响。然而，通过定期的批判性反思，我们认识到我们仍然不确定如何阐述LEA参与的影响。作为一个团队，我们不断讨论有实际生活经验的人参与这项研究的原因和方式。我们探究了一些定义不明确的概念，比如“患者视角”，对于一项旨在改变医生行为且对患者有间接影响的研究来说，这一概念尤其复杂。这种批判性反思增强了团队成员之间的信任和融洽关系（这些特征被认为是患者有意义参与的关键），同时凸显了留出专门时间来探讨参与过程中更模糊方面的价值。简而言之，患者参与并没有按计划顺利进行。我们主张，让有实际生活经验的人参与的“最佳实践”包括定期在实际研究任务之外留出时间，审视患者参与的复杂方面，包括思考有实际生活经验的人如何以及为何参与。
