Bardach Shoshana H, Perry Amanda, Sturke Terry, Stevens Randy, Satcher Milan F
The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Hanover, New Hampshire, USA.
Family Heart Foundation, Fernandina Beach, Florida, USA.
Health Expect. 2025 Apr;28(2):e70194. doi: 10.1111/hex.70194.
Patient engagement plays a valuable role in health research and quality improvement. While prior research highlights some principles and key considerations for patient involvement in these efforts, there is a limited understanding of how best to structure and support this engagement, especially from the patient perspective and for healthcare innovation projects.
Transcripts and notes from semi-structured debrief interviews with patient partners (n = 14) and team leads (n = 22) of 14 healthcare innovation projects conducted between 2020 and 2023 were analyzed thematically to identify perceived benefits, structures and supports that shape lived-experience engagement, and recommendations for future patients' participation in healthcare innovation teams.
Lived-experience engagement was perceived as highly valuable to project teams and rewarding to the patients themselves. Approaches for structuring and supporting the patient role shaped engagement, highlighting several strategies (e.g., providing patient partners with opportunities to reflect and prepare, having smaller check-ins, truly getting to know the patient, and offering opportunities for in-person connection) to enhance the experience and ameliorate challenges. Patients also emphasized the importance of sharing their perspectives to fully realize the benefits of their engagement.
These findings highlight the importance of recognizing the bidirectional benefits of patient engagement within project teams. Taking opportunities to check in with patients throughout the project period, both formally and informally, regarding their preferences for involvement and experiences on the team would enable real-time feedback and adjustments to optimize patient partner engagement.
Since its inception, the Susan and Richard Levy Healthcare Delivery Incubator has incorporated patient and public involvement into the design and operations of its healthcare innovation projects. While the conceptualization of this analysis did not engage patients or the public, patients and individuals with lived experience provided the data. Further, three patient partners were engaged in the review of the findings, two of whom also actively contributed to the preparation of the manuscript by reviewing drafts, adding content, and making revisions.
患者参与在健康研究和质量改进中发挥着重要作用。虽然先前的研究强调了患者参与这些工作的一些原则和关键考虑因素，但对于如何最好地构建和支持这种参与，尤其是从患者的角度以及对于医疗保健创新项目，人们的了解有限。
对2020年至2023年期间开展的14个医疗保健创新项目的患者合作伙伴（n = 14）和团队负责人（n = 22）进行的半结构化汇报访谈的文字记录和笔记进行了主题分析，以确定感知到的益处、塑造实际体验参与的结构和支持，以及对未来患者参与医疗保健创新团队的建议。
实际体验参与被认为对项目团队非常有价值，对患者自身也有回报。构建和支持患者角色的方法塑造了参与度，突出了几种策略（例如，为患者合作伙伴提供反思和准备的机会、进行更小规模的沟通、真正了解患者、提供面对面交流的机会）以增强体验并缓解挑战。患者还强调了分享他们观点对于充分实现参与益处的重要性。
这些发现凸显了认识到项目团队中患者参与的双向益处的重要性。在整个项目期间，通过正式和非正式的方式与患者核对他们对参与的偏好以及在团队中的体验，将能够获得实时反馈并进行调整，以优化患者合作伙伴的参与度。
自成立以来，苏珊和理查德·利维医疗服务孵化器已将患者和公众参与纳入其医疗保健创新项目的设计和运营中。虽然本分析的概念化过程未让患者或公众参与，但患者和有实际体验的个人提供了数据。此外，三名患者合作伙伴参与了研究结果的审查，其中两名还通过审查草稿、添加内容和进行修订，积极为稿件的撰写做出了贡献。
