Intro: Pediatric Liver Transplant (LT) is a lifelong journey which includes constant monitoring and challenges. In PARTNER, we sought to prepare pediatric LT transplant families and providers for collaborative patient-centered outcomes research (PCOR).

Methods: Transplant Families (TF) and the Starzl Network developed 5 learning/feedback modules to (1) teach participants about PCOR and (2) to elicit ideas for PCOR priorities and processes. Modules were delivered as self-guided on-line lessons/surveys and in virtual focus groups. Feedback was summarized to create the PARTNER PCOR Roadmap. (FIGURE)

Results: PARTNER modules were completed by 240 patient partners and 133 pediatric LT providers from 16 centers. In Module 1, we learned that although 76% of parents had enrolled their children in previous research, only 19% had ever gotten research results (15% their own search, 4% from providers). We held 20 focus groups, including 2 for young adults, 2 for Spanish speakers, and 1 for African-Americans to amplify under-represented voices. Amongst 87 patient partners that attended focus groups, 98% felt comfortable sharing their opinions and 98% felt there was clear communication about how their input would impact project decisions. PARTNER PCOR Roadmap sections (https://starzlnetwork.org/partner-results/) were disseminated directly back to PARTNER participants via email and in TF and Starzl Network meetings.

Conclusion: Pediatric LT families/providers are interested in partnering on PCOR. Feedback from a diverse group of stakeholders allowed us to develop PCOR priorities/processes for the Starzl Network. PARTNER engagement strategies could be adapted by other pediatric chronic illness communities to facilitate patient and provider research partnerships.