Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.

Introduction: Patient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means-and what successful patient engagement means-are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs. Methods: Several co-authors (Madeleine Huwe, Becky Woolf, Jennie David) are former ImproveCareNow (ICN) PAC members, and we integrate a narrative review of the extant literature and a case study of our lived experiences as former ICN PAC members. We present nuanced themes of successful patient engagement from our lived experiences on ICN's PAC, with illustrative quotes from other PAC members, and then propose themes and metrics to consider in patient engagement across LHNs. Results: Successful patient engagement in our experiences with ICN's PAC reaches beyond the "levels of engagement" previously described in the literature. We posit that our successful patient/PAC engagement experiences with ICN represent key mechanisms that could be applied across LHNs, including (1) personal growth for PAC members, (2) PAC internal engagement/community, (3) PAC engagement and presence within the LHN, (4) local institutional engagement for those who participate in the LHN, and (5) tangible resources/products from PAC members. Conclusion: Patient engagement in LHNs, like ICN, holds significant power to meaningfully shape and co-produce healthcare systems, and engagement is undervalued and conceptualized dichotomously (eg, engaged or not engaged). Reconceptualizing successful patient/PAC engagement is critical in ongoing efforts to study, support, and understand mechanisms of sustainable and successful patient engagement. Having a modern, multidimensional definition for successful patient engagement in LHNs can support efforts to increase underrepresented voices in PACs, measure and track successful multidimensional patient engagement, and study how successful patient engagement may impact outcomes for patients and LHNs.

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

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.