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 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.
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.
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