Sustainable generation of patient-led resources in a learning health system

Learn Health Syst. 2021 Feb 12;5(3):e10260. doi: 10.1002/lrh2.10260. eCollection 2021 Jul.

Jennie David 1, Catalina Berenblum Tobi 2, Samantha Kennedy 3, Alexander Jofriet 4, Madeleine Huwe 5, Rosa Kelekian 6 7, Melissa Neihart 8, Michelle Spotts 9, Michael Seid 9, Peter Margolis 9, ImproveCareNow Pediatric IBD Learning Health System


Author information

  • 1Psychology Department Nationwide Children's Hospital Columbus Ohio USA.
  • 2University of North Carolina at Chapel Hill School of Medicine Chapel Hill North Carolina USA.
  • 3Nemours Children's Hospital Orlando Florida USA.
  • 4The Ohio State University Columbus Ohio USA.
  • 5Portland Community College Portland Oregon USA.
  • 6University of California Berkeley Berkeley California USA.
  • 7UCSF Benioff/Children's Hospital Oakland Oakland California USA.
  • 8University of Denver Denver Colorado USA.
  • 9Cincinnati Children's Hospital Medical Center Cincinnati Ohio USA.


Background: Patient and Family Advisory Councils (PFACs) are an emerging mechanism to integrate patient and family voices into healthcare. One such PFAC is the Patient Advisory Council (PAC) of the ImproveCareNow (ICN) network, a learning health system dedicated to advancing the care of individuals with pediatric inflammatory bowel disease (IBD). Using quality improvement techniques and co-production, the PAC has made great strides in developing novel patient-led resources.

Methods: This paper, written by patients and providers from ICN, reviews current ICN data on PAC-generated resources, including creation processes and download statistics.

Results: Looking at different iterations of PAC infrastructure, this paper highlights specific leadership approaches used to increase patient involvement and improve resource creation. Emerging data suggests that the larger ICN learning health system has had limited interactions with these resources.

Conclusion: ICN provides a novel approach for meaningful integration of patient partners into learning health systems. This paper points to the incredible value of PFAC expertise in the resource creation process. Future work should seek to support PFAC development across other diseases and address the challenges of integrating patient-led resources into clinical care.



© Copyright 2013-2024 GI Health Foundation. All rights reserved.
This site is maintained as an educational resource for US healthcare providers only. Use of this website is governed by the GIHF terms of use and privacy statement.