ArticleLearning health systems2024
Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.
Article in Learning health systems, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 13 citations in OpenAlex.
- Patient Engagement Activities and Infrastructure Among US Veterans Affairs National Research Networks.Journal of general internal medicine · 2026Article
- Building meaningful partnerships: engaging and co-developing a patient advisory council to inform the implementation of person-centred quality indicators in Alberta primary care.Research involvement and engagement · 2026Article
- Evaluation of the Implementation and Contribution of Patient Partners on a Steering Committee at a University Hospital in the Province of Québec, Canada.Healthcare (Basel, Switzerland) · 2026Article
- The Development and Co-Production of a Caregiver Coping Resource for Pediatric Inflammatory Bowel Disease and Autoimmune Liver Disease.Learning health systems · 2026Article
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- The PaTH from discovery to implementation: Using a PCORnet® Clinical Research Network's own research to prioritize topics for collaborative health improvement activities.Learning health systems · 2025Article
- Engagement as a mechanism of action in collaborative learning health systems.Learning health systems · 2025Article
- Patient Advisory Groups in Inflammatory Bowel Disease: A Collaborative Relationship Between Patients and Researchers.Crohn's & colitis 360 · 2025Article
- Interventions to improve system-level coproduction in the Cystic Fibrosis Learning Network.BMJ open quality · 2024Article
- Using a collaborative learning health system approach to improve disease activity outcomes in children with juvenile idiopathic arthritis in the Pediatric Rheumatology Care and Outcomes Improvement Network.Frontiers in pediatrics · 2024Article
- Conceptualizing and redefining successful patient engagement in patient advisory councils in learning health networks.Learning health systems · 2024Article
- A holistic approach to integrating patient, family, and lived experience voices in the development of the BrainHealth Databank: a digital learning health system to enable artificial intelligence in the clinic.Frontiers in health services · 2023Article
Corrections and comments
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Authors and funding
7 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.