Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. PATIENT OR PUBLIC CONTRIBUTION: 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.