ICN Research Explained: Sustainable Generation of Patient-Led Resources in a Learning Health System

Study Authors

Jennie David, Catalina Berenblum Tobi, Samantha Kennedy, Alexander Jofriet, Madeleine Huwe, Rosa Kelekian, Melissa Neihart, Michelle Spotts, Michael Seid, Peter Margolis, ImproveCareNow Pediatric IBD Learning Health System

Study Background

Within ImproveCareNow, we all recognize the importance of collaborating with patients that have IBD. In the larger medical world, working with patients remains relatively novel, and there are outstanding questions about how to make these collaborations successful. The ImproveCareNow Patient Advisory Council (PAC) has developed a number of clinical resources (e.g., the Body Image Toolkit), and PAC members have published academic papers on specific resources and outcomes. However, the approach the PAC has used to work within the ICN framework to develop these resources has not yet been described in the academic literature. The authors of this study thought it would be useful to publish a paper describing the ways in which patients can lead the generation of new knowledge and resources, and to describe how this patient engagement can be sustainable. The authors of the study are a collection of previous and current PAC members and other ICN leaders.

Study Overview

The study provides an overview of the development and restructuring of the PAC, and how that unique structure has allowed patient advocates to work together to harness the power of ICN to create meaningful, patient-driven resources. The study also provides an example that other medical networks may use as a model for increasing patient engagement and developing patient-driven tools.

Study Results - What does it all mean? 

This study illustrates what many in ICN already believe – that engaging patients is possible, important, and vital to improving care! This study also provides examples of the exciting, innovative work the PAC has been engaged in relative to developing patient advocates that become an integral part of medical decision making and the generation of new knowledge and resources.

Study status

This study was first published February 12, 2021. It has been added to our list of published research studies. You can view our community's published research by visiting our Publications page >>

Prepared by: Jennie David, PhD

Reviewed by: Parent Working Group Research Subcommittee

About ICN Research Explained: We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with the Parent Working Group Research Subcommittee to create and share parent-approved research summaries called “ICN Research Explained."

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