Patient Engagement in Pediatric Liver Disease: Experiences From the A-LiNK, PFIC.org, and Starzl Networks

Description

This session updates the community on the experience and expertise of patient engagement from 3 ongoing collaboratives:

• The Autoimmune Liver Disease Network for Kids (A-LiNK) and the A-LiNK connections 
• PFIC.org and their Patient-Centered Outcomes Research Institute (PCORI) funded IMPACT project (identifying research targets by merging patient and clinician treatment information)
• the Starzl Network for Excellence in Pediatric Transplantation and their PCORI funded PARTNER AD³vance project (patient-centered research in pediatric transplant—engaging families and recipients—adolescent and young adult advisors)

Presenters highlight the importance of patient engagement in setting research agendas, strategies for successful patient engagement, and how patient engagement affects project development and progress.