Cultural health capital and patient partner recruitment into healthcare improvement work.

A rising emphasis on patient involvement in clinical research and healthcare improvement has led to the steady incorporation of patients and caregivers into this work. However, interactional factors shaping recruitment processes are not well understood. In this paper, we present a qualitative analysis of interviews with twenty-six patients, family members, engagement staff and healthcare providers who are engaged in healthcare improvement work in the United States. We focus on how stakeholders account for recruitment decisions to participate in healthcare improvement work. We find that expressions of and judgments about patients' and caregivers' cultural health capital shape providers' decisions to extend invitations to participate in healthcare improvement work. These findings extend current conceptualizations of cultural health capital beyond the clinical encounter to reveal factors shaping patient recruitment into healthcare improvement work. In theorizing how cultural health capital shapes action in this new setting, we found that healthcare providers, engagement staff, and patients/caregivers attended to different aspects of cultural health capital when accounting for why they extended or received a recruitment pitch. We further found that participating in healthcare improvement work led to a boost in cultural health capital for patients and caregivers, which they could use to develop transmissible forms of cultural health capital for less centrally involved patients and caregivers. Finally, we describe how participants in healthcare improvement collaboratives account for a lack of diversity among partners. These findings help us hypothesize the consequences of recruitment processes that rely on displays and judgments of cultural health capital and identify possibilities for change. Using the case of healthcare improvement work in Collaborative Learning Health Systems, our findings advance past work on cultural health capital in medical sociology by theorizing the role of cultural health capital in recruitment processes.

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.