Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network

Abstract

Background: Coproduction is defined as patients and clinicians collaborating equally and reciprocally in healthcare and is a crucial concept for quality improvement (QI) of health services. Learning Health Networks (LHNs) provide insights to integrate coproduction with QI efforts from programmes from various health systems.

Objective: We describe interventions to develop and maintain patient and family partner (PFP) coproduction, measured by PFP-reported and programme-reported scales. We aim to increase percentage of programmes with PFPs reporting active QI work within their programme, while maintaining satisfaction in PFP-clinician relationships.

Methods: Conducted in the Cystic Fibrosis Learning Network (CFLN), an LHN comprising over 30 cystic fibrosis (CF) programmes, people with CF, caregivers and clinicians cocreated interventions in readiness awareness, inclusive PFP recruitment, onboarding process, partnership development and leadership opportunities. Interventions were adapted by CFLN programmes and summarised in a change package for existing programmes and the orientation of new ones. We collected monthly assessments for PFP and programme perceptions of coproduction and PFP self-rated competency of QI skills and satisfaction with programme QI efforts. We used control charts to analyse coproduction scales and run charts for PFP self-ratings.

Results: Between 2018 and 2022, the CFLN expanded to 34 programmes with 52% having ≥1 PFP reporting active QI participation. Clinicians from 76% of programmes reported PFPs were actively participating or leading QI efforts. PFPs reported increased QI skills competency (17%-32%) and consistently high satisfaction and feeling valued in their work.

Conclusions: Implementing system-level programmatic strategies to engage and sustain partnerships between clinicians and patients and families with CF improved perceptions of coproduction to conduct QI work. Key adaptable strategies for programmes included onboarding and QI training, supporting multiple PFPs simultaneously and developing financial recognition processes. Interventions may be applicable in other health conditions beyond CF seeking to foster the practice of coproduction.

Keywords: community-based participatory research; healthcare quality improvement; patient participation; patient-centred care; teamwork.

Figure 1. Patient and family partner (PFP) scale over time. P-chart for proportion of programmes with at least 1 PFP that (A) is actively participating in quality improvement (QI) (scale 5+) and (B) is leading QI initiatives (scale 6+).

Figure 2. Reported range of patient and family partner (PFP) coproduction scale from 2018 to 2022. (A) Stacked histogram representing range of monthly PFP engagement scale responses from learning to leading and (B) pie chart of average proportion of scale responses. QI, quality improvement.

Figure 3. Programme coproduction scale. P-chart for proportion of programmes rating patient and family partners (PFPs) actively participating in quality improvement (QI) work (scale 5+).

Figure 4. Patient and family partner (PFP) quality improvement (QI) Self-Assessment Scale. Run chart of annual percentage of programmes with a PFP rating comfort in application and analysis (scale 4+) for QI skills (SMART aim, run charts, Plan-Do-Study-Act cycles). N is the median number of programmes with responding PFPs. Red line—average across years.