Lessons Learned from a Parkinson's Research Patient Advisory Board Model with Academic Centers.

IF 0.6 4区医学 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Progress in Community Health Partnerships-Research Education and Action Pub Date : 2025-01-01 DOI:10.1353/cpr.2025.a965357

Megan Dini, Karlin Schroeder, Jori E Fleisher, Martie Carnie, Benzi M Kluger, Sandhya Seshadri, Lance Wilson, Melissa J Armstrong, Christiana Evers, Casey Gallagher, Patricia Davies, Megan Feeney

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Abstract

Background: There is minimal comparative effectiveness research (CER) in Parkinson's disease (PD). Engaging people with PD in the research process through patient advisory boards (PAB) is one way to address this gap.

Objectives: To describe the project model and lessons learned from a PAB pilot project in five Parkinson's Foundation Centers of Excellence in CER.

Methods: A virtual training and toolkit on patient engagement, PABs and CER was created and used to implement PABs. Satisfaction and impact of the PAB training and pilot model was assessed via surveys.Results and Lessons Learned: PAB participants (n = 28) felt the training was comprehensive, their feedback was prioritized, and impacted the PAB goal of developing a CER question. Recommendations include giving clinic staff protected time for patient engagement and providing funding.

Conclusions: The developed model led to an increase in participation in CER and effectively trained staff, people with PD and care partners in patient engagement.

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从帕金森氏症研究患者咨询委员会模型与学术中心的经验教训。

背景：帕金森病（PD）的比较疗效研究（CER）很少。通过患者咨询委员会（PAB）让PD患者参与研究过程是解决这一差距的一种方法。目的：描述在CER的五个帕金森基金会卓越中心进行的PAB试点项目的项目模式和经验教训。方法：创建了一个关于患者参与、pab和CER的虚拟培训和工具包，并用于实施pab。通过调查评估PAB培训和试点模式的满意度和影响。结果和经验教训：PAB参与者（n = 28）认为培训是全面的，他们的反馈是优先考虑的，并影响了PAB制定CER问题的目标。建议包括为诊所工作人员提供受保护的时间，以便患者参与并提供资金。结论：开发的模型增加了对CER的参与，并有效地培训了员工，PD患者和患者参与的护理伙伴。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Progress in Community Health Partnerships-Research Education and Action PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-

CiteScore

1.30

自引率

0.00%

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