Integrating family and caregiver voices in health care management research

Since the Institute of Medicine's landmark Crossing the Quality Chasm report (Committee on Quality of Health Care in America, 2001), patient-centered approaches to care have received considerable research attention. The patient-centered approach has yielded important advances, but with the increase in chronic disease, more care is falling to families and other caregivers, often in home settings. In light of health, social, and technological changes, health care management research must reappraise and elevate the role of families and caregivers in organizing and improving care. To the extent that the family role in care delivery has been studied in health care management, it has tended to focus on pediatric populations and family-centered care (e.g., involving the family in discussion with the care team during rounds) in hospitals. The rapidly shifting policy environment underscores the urgency of this work. As trust in expertise and institutions erodes, patient and family voices are increasingly ascendant. Social movements promoting alternative medicine and treatments exemplify these shifts (e.g., Tan, 2024) as so broader populist currents that challenge the primacy of scientific and professional authority (Cohen, 2025). Simultaneously, patients and families “do their own research” by drawing on “Dr. Google,” artificial intelligence, and social media. These tools and movements equip patients with more information and confidence, both of which reshape how families and caregivers relate to providers and organizations. In other words, family members and caregivers feel empowered to define what appropriate and high-quality care is. Research is needed to examine the conditions under which and the processes by which these relationships become more generative therapeutic connections. For example, recent work on what patients seek in their interactions with providers (Rathert et al., 2024) suggests the value of asking similar questions of families: What do they want from these relationships, and how might organizations better respond? Families and caregivers play overlooked but vital roles in monitoring, coordinating, and advocating for safe care in hospitals and home settings. How can they be systematically integrated into care teams to advance high reliability organizing? Given their increasing importance and influence, how can families and caregivers aid change in continuous improvement in care delivery? Prior work on patient and family advisory committees is mixed. Recent research by Satterstrom et al. (2025) suggests that change teams struggle to meaningfully incorporate patient perspectives let alone family perspectives, especially when they diverge from provider and staff perspectives. Future work could also seek to better understand the micro (e.g., interpersonal processes) and macro (e.g., structural) conditions that enable families and caregivers to foster change for truly family- and patient-centered care. Families and caregivers are not peripheral actors; they are integral to how care is enacted, experienced, and improved. At HCMR, we welcome work that attempts to understand the effects of shifting macro conditions on the varied ways in which families and other caregivers interact with the care system, their attempts to (re)shape it, and the effects of their efforts on patients, care providers, and organizations. Timothy J. VogusVanderbilt University Owen Graduate School of Management, Nashville, Tennessee. E-mail: [email protected]