Getting what is needed, when it's needed: Sharing information, knowledge, and know-how in a Collaborative Learning Health System

Abstract

Background: Collaborative Learning Health Systems (CLHS) improve outcomes in part by facilitating collaboration among all stakeholders. One way to facilitate collaboration is by creating conditions for the production and sharing of medical and non-medical resources (information, knowledge, and knowhow [IKK]) so anybody can get “what is needed, when it's needed” (WINWIN) to act in ways that improve health and healthcare. Matching resources to needs can facilitate accurate diagnosis, appropriate prescribing, answered questions, provision of emotional and social support, and uptake of innovations. Objectives: We describe efforts in ImproveCareNow, a CLHS improving outcomes in pediatric inflammatory bowel disease (IBD), to increase the number of patients and families creating and accessing IKK, and the challenges faced in that process. Methods: We applied tactics such as outreach through trusted messengers, community organizing, and digital outreach such as sharing resources on our website, via social media, and email to increase the number of people producing, able to access, and accessing IKK. We applied an existing measurement system to track our progress and supplemented this with community feedback. Results: In August of 2017 we identified and began measuring specific actions to track community growth. The number of patients and families producing IKK has increased by a factor of 2.7, using resources has increased by a factor of 4.1 and aware of resources as increased by a factor of 4.0. We identified challenges to measurement and scaling. Conclusions: It is possible to intentionally increase the number of patients and caregivers engaged with a CHLS to produce and share resources to improve their health.