Iroz Cassandra B, Godfrey Marjorie M, Early Coua, Dell Brad, Boyle Abigail, Tallarico Erin, Reed Julie E, Johnson Julie K
Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
The Microsystem Academy, Lebanon, New Hampshire, USA; School of Health and Welfare, Jönköping University, Jönköping, Sweden.
Health Expect. 2025 Jun;28(3):e70312. doi: 10.1111/hex.70312.
Engaging patients and family members in healthcare quality improvement (QI) is essential to meet the needs of those who receive care. The objective of this study was to describe the experience of patient/family partners (PFPs) in a national QI collaborative and to develop recommendations for best practices for patient engagement.
We conducted focus groups with PFPs in a national QI collaborative focused on improving transitions of care between cystic fibrosis (CF) and lung transplant programmes. Audio recordings were transcribed verbatim, coded inductively and analysed through thematic analysis. Member checking with PFPs, clinicians and team coaches was used to refine the findings and develop recommendations.
Five PFPs participated in two focus groups, which revealed that PFPs (1) were motivated to participate as members of the QI team because they felt deeply connected to their CF care teams and wanted to help other patients, (2) felt engaged in the QI collaborative and appreciated the sense of community, support from the team coach and the opportunity to take ownership of projects, and (3) suggested improvements related to timing of meetings, compensation, being mindful when discussing sensitive information and setting clear expectations. Member checking revealed the need for equitable recruitment processes and tailoring the role to the individual participants. The findings were used to develop and change processes in the collaborative.
The structure of the national QI collaborative supported patient/family partnership through structured meetings and a focus on building relationships of mutual respect. The findings demonstrated the need for a more equitable recruitment process, better expectation setting and customisation of the role to the individual skills, needs and preferences of the participants.
Patients and family members of people living with CF participated in this study through focus groups and member checking. One CF patient (B.D.) is a co-author of this paper and contributed to data analysis, sensemaking, writing and editing.
让患者及其家庭成员参与医疗质量改进（QI）对于满足接受治疗者的需求至关重要。本研究的目的是描述患者/家庭伙伴（PFP）在全国性QI协作中的经历，并为患者参与的最佳实践制定建议。
我们在一个专注于改善囊性纤维化（CF）与肺移植项目之间护理过渡的全国性QI协作中，与PFP进行了焦点小组讨论。音频记录逐字转录，进行归纳编码并通过主题分析进行分析。通过与PFP、临床医生和团队教练进行成员核对来完善研究结果并制定建议。
五名PFP参与了两个焦点小组讨论，结果显示PFP（1）作为QI团队成员参与的积极性很高，因为他们感觉与CF护理团队联系紧密，并希望帮助其他患者；（2）感到参与了QI协作，并赞赏这种社区感、团队教练的支持以及对项目负责的机会；（3）建议在会议时间安排、报酬、讨论敏感信息时注意分寸以及明确期望等方面进行改进。成员核对表明需要公平的招募流程，并根据个体参与者调整角色。这些研究结果被用于在协作中制定和改变流程。
全国性QI协作的结构通过结构化会议和注重建立相互尊重的关系来支持患者/家庭伙伴关系。研究结果表明需要更公平的招募流程、更好地设定期望，并根据参与者的个人技能、需求和偏好对角色进行定制。
CF患者及其家庭成员通过焦点小组讨论和成员核对参与了本研究。一名CF患者（B.D.）是本文的共同作者，参与了数据分析、意义构建、写作和编辑工作。
