Fix Gemmae M, Kaitz Jenesse, Herbst Abigail N, Wiener Renda Soylemez, Crocker Dave, Miano Dani, Barker Anna M
Center for Healthcare Organization and Implementation Research (CHOIR), VA Bedford and VA Boston Healthcare System, Bedford/Boston, MA, USA.
Section of General Internal Medicine, Department of Medicine, Boston University Chobanian & Avedisian School of Medicine, Boston, MA, USA.
J Patient Exp. 2024 Jun 7;11:23743735241252247. doi: 10.1177/23743735241252247. eCollection 2024.
Co-design provides a meaningful way to engage patients in research. However, there is limited practical guidance. We used our co-design project to identify strategies for other researchers. An ethnographic case study design was used. Data included participant observation of co-design meetings, meeting minutes, analytic fieldnotes, qualitative patient interviews, and research team member self-reflections. Additionally, we got external feedback. We analyzed data iteratively. Our team included 5 patients and 6 researchers. We identified 3 strategies to include patients in co-design: (1) Deliberately build the team, from recruiting patients to specifying roles. (2) Tailor the meeting format to thoughtfully use patients' time and expertise. (3) Disrupt traditional hierarchies, to empower patients to actively participate. Researchers seeking to include patients as team members should consider: team composition and roles, leveraging meeting formats to optimize contributions and purposefully creating a culture of collaboration, so patient expertise informs the end product. Our work provides practical guidance for researchers to incorporate patient expertise in the co-design process and meaningfully involve them in their work.
共同设计为让患者参与研究提供了一种有意义的方式。然而,实际指导却很有限。我们利用我们的共同设计项目为其他研究人员确定策略。采用了人种学案例研究设计。数据包括对共同设计会议的参与观察、会议记录、分析性实地记录、定性患者访谈以及研究团队成员的自我反思。此外,我们还获得了外部反馈。我们对数据进行了反复分析。我们的团队包括5名患者和6名研究人员。我们确定了将患者纳入共同设计的3种策略:(1)精心组建团队,从招募患者到明确角色。(2)调整会议形式,以充分利用患者的时间和专业知识。(3)打破传统等级制度,使患者能够积极参与。寻求将患者纳入团队的研究人员应考虑:团队构成和角色、利用会议形式优化贡献以及有目的地营造合作文化,以便患者的专业知识能为最终成果提供信息。我们的工作为研究人员在共同设计过程中纳入患者专业知识并让他们切实参与工作提供了实际指导。