New Publication: Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks

"To change the cultural norm in medicine is a daunting task, but there is a place to begin: publications. Publishing is academic currency, by which ideas can spread like wildfire in a way once the information is distilled into a manuscript. It is a way to translate the passion and success of ImproveCareNow to clinicians beyond the network, to begin to share the seemingly bold idea that patients and parents are a key part of care and research." - Jennie David

Jennie shared those words in a 2018 LOOP post highlighting "A Guide to Gutsy Living”: Patient-Driven Development of a Pediatric Ostomy Toolkit," which she co-authored with Alex Jofriet. Published in Pediatrics, their paper was first of its kind to describe how pediatric patients and parents identified the need for a resource (an Ostomy Toolkit), developed the resource according to quality improvement guidelines, and worked clinicians to vet the medical information in the toolkit for accuracy. When Jennie and Alex, both Patient Advisory Council (PAC) members at the time, wrote and published their manuscript together it marked an important step toward the meaningful engagement of patients in every step of the ImproveCareNow (ICN) research process.

Today, Jennie is a practicing clinical psychologist, an active member of the ICN Research and DEI Committees, a newly elected member of the ICN Board of Directors, and co-chair of the ICN SWAP (Social Worker & Psychologist) group. She is an enthusiastic and respected mentor to the next generation of patient scholars who are continuing to shape and share the story of PAC/patient engagement in ImproveCareNow. By Jennie's count there now are four PAC-focused publications, with the latest one coming out this June.

Co-first authors Madeleine Huwe and Becky Woolf, worked with Jennie and others in ImproveCareNow to redefine and contextualize patient engagement and its importance, drawing from their own experiences and those of other members and leaders of the ICN PAC.

Importantly, their paper encourages a move away from a dichotomous (engaged/not engaged) approach to assessing engagement, toward a more modern, multidimensional understanding. They review current literature about patient engagement, share their own lived experiences as PAC members and leaders, and they propose themes and metrics that other Learning Health Networks can steal shamelessly from to implement in their own PACs or patient engagement efforts. 

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