Harrison James D, Palmer Nynikka R A, Cabrera Abby, Fleisher Paula, Wong Erica, LeSarre Monique, Grumbach Kevin, Banta Jim, Tealer Lisa, Reynolds Andrew, Wassmann Arianna, Rose Teri, Nguyen Tung
Division of Hospital Medicine, University of California San Francisco, San Francisco, CA, USA.
Division of General Internal Medicine at San Francisco General Hospital, Department of Medicine, University of California San Francisco, School of Medicine, San Francisco, USA.
J Clin Transl Sci. 2022 Jun 7;6(1):e88. doi: 10.1017/cts.2022.413. eCollection 2022.
We created a COVID-19 Research Patient and Community Advisory Board (PCAB) to provide patient and community input into clinical and translational research studies. The purpose of this article is to describe the PCAB creation, implementation, and evaluation.
We identified PCAB members who had participated in previous stakeholder engaged activities at our institution and invited their participation. We created a systematic consultation process where researchers could submit plain language research summaries and questions for the PCAB. A facilitated 1-hour virtual consultation was then held where PCAB members provided feedback. We assessed satisfaction of PCAB members and researchers who received consultations using surveys. We also reviewed video recordings of PCAB consultations and reflections from team meetings to identify key lessons learned.
Twenty-seven PCAB members took part in 23 consultation sessions. Twenty-two completed an evaluation survey (81% response rate). Most members agreed or strongly agreed their opinions were valued (86%), it was a productive use of time (86%) and were satisfied (86%). Nineteen researchers completed an evaluation survey (83% response rate). Researchers reported positive experiences of working with the PCAB. Additional insights include limited funding in COVID-19 research for equitable community engagement, deficiencies in researcher communication skills, and a lack of cultural humility incorporated into study activities.
PCAB members provided recommendations that maximized the patient-centeredness and health equity focus of COVID-19 research. The detailed description of the process of developing, implementing, and evaluating our PCAB can be used as a template for others wishing to replicate this engagement model.
我们成立了一个COVID-19研究患者及社区咨询委员会（PCAB），以便患者和社区能够为临床和转化研究提供意见。本文旨在描述PCAB的创建、实施和评估情况。
我们确定了曾参与过本机构以往利益相关者参与活动的PCAB成员，并邀请他们参与。我们创建了一个系统的咨询流程，研究人员可以向PCAB提交通俗易懂的研究摘要和问题。随后举行了一场为期1小时的虚拟咨询会，PCAB成员在会上提供反馈。我们通过调查评估了接受咨询的PCAB成员和研究人员的满意度。我们还查看了PCAB咨询会的录像以及团队会议的反思，以确定关键经验教训。
27名PCAB成员参加了23次咨询会议。22人完成了评估调查（回复率81%）。大多数成员同意或强烈同意他们的意见受到重视（86%），这是对时间的有效利用（86%），并且感到满意（86%）。19名研究人员完成了评估调查（回复率83%）。研究人员报告了与PCAB合作的积极经历。其他见解包括COVID-19研究中用于公平社区参与的资金有限、研究人员沟通技巧不足以及研究活动中缺乏文化谦逊态度。
PCAB成员提出了建议，使COVID-19研究最大限度地以患者为中心并关注健康公平。对我们PCAB的开发、实施和评估过程的详细描述可作为希望复制这种参与模式的其他人的模板。
