(90) Advancing Patient-Family Partnership through Shared Co-Production Tools in Two CF Learning Network Sites

Background: Center-level co-production is a collaborative model that engages patients or families as equal and reciprocal members on a CF team to improve care. The Cystic Fibrosis Learning Network (CFLN) developed a change package (CP) i.e. a set of refined tools to foster effective, bi-directional partnerships with patient and family partners (PFPs) to co-produce quality improvement (QI) initiatives. Seattle Children’s Hospital (SCH) pediatric and University of Virginia (UVA) adult centers have PFPs embedded on each CFLN QI team respectively since 2015 and 2017. Using the CFLN co-production CP, we aimed to recruit new PFPs to each QI team.

Objective: To recruit and onboard new PFPs to the SCH and UVA adult QI teams and maintain a co-production score at 5 or higher from July 1, 2021 to April 1, 2022.

Methods: The Model for Improvement framed each team’s vision and measures. The teams individually adapted CFLN CP recruitment and onboarding tools to the local environment. Recruitment Plan-Do-Study-Act (PDSA) cycles tested distribution of recruitment materials and discussion of the PFP role and expectations. Onboarding PDSA cycles tested altered meeting times and length, use of meeting roles, structured team agendas, HIPAA training, and QI skills training. We used a co-production score (scoring system (0-7) submitted to CFLN monthly to rate co-production capacity.

Results: We adapted and distributed recruitment tools by email, US mail, and in-clinic. SCH: Of 17 respondents, 8 connected with the CF ARNP and a current PFP. Seven candidates remained interested. The team prioritized values for co-production such as respect, bandwidth for engagement, and diversity of experience and held a blind vote to select 2 candidates to join 2 current PFPs. Onboarding PDSAs from 1/22-3/22 resulted in high engagement; at least 1 new PFP attending all weekly meetings. Both new PFPs attended 87% of meetings. Three of 4 PFPs attended 54% of meetings. Existing PFPs report they felt “integrally involved” and “empowered to help parents assimilate into the group.” New PFPs felt “safe and comfortable” to ask questions and the team was “all so welcoming.” Average co-production score was maintained at 5 or higher (average 6.4 of 7). UVA: The process underwent 3 PDSA cycles: (1) three respondents expressed interest, none applied. Barriers cited were time of meeting and weekly commitment burden; (2) reduced PFP commitment burden to 1 QI meeting per month and extended the application deadline, none applied; (3) the team identified 6 potential candidates with strong self-advocacy and CF community engagement for targeted invitations to apply. One of 2 respondents completed the recruitment process. Since 1/22, the new PFP has attended all team and PFP workgroup meetings. At least 1 of 3 PFPs attended all monthly team and CFLN PFP workgroup meetings. Co-production scores maintained at a level of 6-7 throughout recruitment.

Conclusions: Partnership between PFPs and the QI team is a key driver to successful center-level co-production. Using tools and processes organized in the CFLN co-production CP, 2 QI-proficient teams of diverse contexts (pediatric and adult) successfully engaged new PFPs and maintained partnership. We anticipate adaption of the co-production CP tools with QI skills may facilitate authentic partnerships with PFPs for spread to more CF teams.

Acknowledgements: Funded by a CFF grant.

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