Vasculitis Foundation, Kansas City, MO, USA.
Organizational Dynamics, Liberal and Professional Studies, University of Pennsylvania, Philadelphia, PA, USA.
Orphanet J Rare Dis. 2019 Jan 24;14(1):21. doi: 10.1186/s13023-018-0969-1.
There is increasing interest in actively involving patients in the process of medical research to help ensure research is relevant and important to both researchers and people affected by the disease under study. This project examined the recently formed Vasculitis Patient-Powered Research Network (VPPRN), a rare disease research network, to better understand what investigators and patients learned from working on research teams together.
Qualitative interviews were conducted by phone with patients, physician/PhD-investigators, and study managers/staff who participated in the network. The question guiding the interviews and observational analysis was: "What have investigators and patients learned about working together while working on VPPRN teams?" Interview transcripts were analyzed in combination with observations from multiple in-person and telephone meetings.
Transcripts and notes were reviewed and coded from 22 interviews conducted among 13 patient-partners, 5 study managers/staff, and 4 MD or PhD-investigators, and 6 in-person and 42 telephone/web-conference meetings. Patient-partners and investigators characterized their working relationships with one another, what they learned from their collaborations, and provided recommendations for future teams of patient-partners and investigators. Major themes included the great benefits of communicating about activities, being open to listening to each group member, and the importance of setting reasonable expectations.
Direct engagement in research design and development by patient-partners and co-learning between investigators and patient-partners can result in a positive and productive working relationship for all members of a medical research team. This bi-directional engagement directly benefits and impacts research design, participant recruitment to studies, and study subject retention.
越来越多的人对积极让患者参与医疗研究的过程感兴趣，以帮助确保研究对研究人员和受研究疾病影响的人都具有相关性和重要性。本项目研究了最近成立的血管炎患者主导的研究网络（Vasculitis Patient-Powered Research Network，VPPRN），这是一个罕见病研究网络，以更好地了解研究人员和患者在共同研究团队中工作时所学到的知识。
通过电话对参与该网络的患者、医师/博士研究员以及研究经理/工作人员进行了定性访谈。指导访谈和观察分析的问题是：“在 VPPRN 团队中工作时，研究人员和患者对共同工作有什么了解？”访谈记录与来自多次面对面和电话会议的观察结果相结合进行分析。
对 13 名患者伙伴、5 名研究经理/工作人员、4 名医学博士或博士研究员中的 22 名进行了访谈，记录了访谈记录和笔记，并进行了审查和编码，并进行了 6 次面对面会议和 42 次电话/网络会议。患者伙伴和研究人员描述了他们之间的工作关系、从合作中学到的知识，并为未来的患者伙伴和研究人员团队提供了建议。主要主题包括交流活动的巨大好处、对倾听每个小组成员的开放态度以及设定合理期望的重要性。
患者伙伴直接参与研究设计和开发，以及研究人员和患者伙伴之间的共同学习，可以为医疗研究团队的所有成员建立积极和富有成效的工作关系。这种双向参与直接有利于和影响研究设计、研究参与者的招募以及研究对象的保留。
