"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. 


Find this and all 2023 Publications by members of ImproveCareNow on our website
ImproveCareNow exists to transform the health, care and costs for all children and adolescents with Crohn's disease and ulcerative colitis (Inflammatory Bowel Disease or IBD). To do this ICN has created an inclusive, transparent and collaborative community where patients, families, clinicians, researchers, improvers, collaborators and friends are all empowered to learn, share and continuously improve, bringing about more reliable, proactive IBD care and healthier children and youth. We welcome your involvement:
💙 young patients (14+) with IBD can join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 
💚 caregivers of young people with IBD can join the Parent/Family Advisory Council "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
💙 make a tax-deductible donation to support ImproveCareNow - "As a 501c3 non-profit, ImproveCareNow is proud to use every dollar donated to advance our mission of improving the health and care of children and adolescents with IBD." - Kristin Howe, Executive Director
💚 stay #InTheLOOP with IBD stories on the ICN blog "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 
💙 download & use free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
💚 join our CIRCLE -"Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa 

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