The learning health system for pediatric nephrology: building better systems to improve health.

Learning health systems (LHS) align science, informatics, incentives, and culture for continuous improvement and innovation. In this organizational system, best practices are seamlessly embedded in the delivery process, and new knowledge is captured as an integral byproduct of the care delivery experience aimed to transform clinical practice and improve patient outcomes. The objective of this review is to describe how building better health systems that integrate clinical care, improvement, and research as part of an LHS can improve care within pediatric nephrology. This review will provide real-world examples of how this system can be established in a single center and across multiple centers as learning health networks.

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.

Community Provider Perspectives on an Autism Learning Health Network: A Qualitative Study.

Although autism is highly prevalent, no single care center has enough patients to produce generalizable knowledge of optimal care; this slows the pace of quality improvement research. The Autism Care Network (ACNet) is a learning health network (LHN) dedicated to developing the most effective approach to care for autistic children and adolescents through integrating clinical and research data. Given that most autistic patients receive care in the community, expanding ACNet to include community providers is essential to improve autism care. Our objectives were to: (1) understand the current data collection practices, learning needs, capacity, and overall interest of community clinicians in participating in an autism LHN; (2) identify their perspectives on participating in a LHN and ways in which their engagement and interest can be cultivated. Participants were purposively sampled from community physicians who participated in ASD-focused educational programming. In-depth semi-structured interviews were conducted. Analysis of 29 participant interviews yielded five primary themes: Navigating Administrative Challenges, Improving Data Collection Practices, Increasing Provider Confidence and Competence, Breaking Down Silos, and System and Societal Barriers to Achieving Best Practices. This study provides a rich and nuanced understanding of the experiences of community providers regarding the challenges of ASD care provision in the community. Overall, these findings suggest that LHNs have the potential to address several of the issues in community autism care highlighted by community providers.

Building responsive governance for learning networks.

Introduction: This article describes a strategic governance review of Improve Care Now (ICN), a learning health network focused on improving clinical outcomes for adolescents with Crohn's disease and ulcerative colitis (IBD). ICN is organized around an "enhanced" patient registry and collaborative community of patients, parents, clinicians, and researchers. Methods: The engagement included a review of ICN's governing documents, interviews and facilitated sessions with ICN stakeholders, and desk review to identify governance best practices that applied to ICN. Results: The review made recommendations to establish a plan to transition ICN's governance to its community, build pipelines for future network leaders, escalate uncommon data-sharing decisions, and design safe online spaces for community members. Conclusions: Governance can provide the scaffolding to help networks grow: organizing structures that support consistent, well documented, and inclusive decision-making.