Patient Engagement, Chronic Illness, and the Subject of Health Care Reform

ABSTRACT

In the United States, in the wake of health care reform, health care systems have been subject to intensifying demands to increase patient engagement, a term that refers broadly to participation in care. We draw from ethnographic research in urban health care safety-net settings in California to examine efforts to increase patient engagement among chronically ill, marginalized patients who have long been disconnected from outpatient care. We suggest that the work of engagement in this context involved getting people to accept the norms of biomedicine while also reworking these norms to account for the complex circumstances of their lives.

KEYWORDS:

• United States
• chronic illness
• health care
• patient engagement
• value-based care

Acknowledgments

We are indebted to study participants for their time and attention, and for sharing their complicated work with us. We thank our co-investigators Elizabeth Davis, Kathleen Dracup, David Moskowitz, and Dean Schillinger. We also thank Michael D’Arcy, Joel van de Sande, and the anonymous reviewers and Editor Lenore Manderson of Medical Anthropology for their careful reading and generous feedback.

Notes

1. For “patient activation,” there were two articles published in 2000, 28 in 2010, and 128 in 2018.

2. This group is also referred to as “complex”, “high need, high cost,” “super-utilizers” or “frequent fliers” (Fleming et al. 2019).

3. The law also established the Patient-Centered Outcomes Research Institute, a federal agency devoted to research organized around the concept of patient-centered care and played a role in the rapid expansion of engagement research.

4. The metrics used in most value-based payment arrangements are set by the federal government and include measures of health care quality, outcomes, and cost efficiency (Center for Medicaid Services 2020).

5. Funded by Medicaid initiatives called Delivery System Reform Incentive Payments.

6. At the time of this writing, there are no published evaluations of the particular programs we studied. A clinical trial of one pioneering CCM program showed no effect of the intervention on hospitalizations, despite high patient engagement: 95% of patients had three or more encounters with the care team and received an average of 7.6 home visits (Finkelstein et al. 2020). Even with this initial negative finding, CCM programs are proliferating nationally. Other studies have shown positive and there remains significant debate about the best way to help marginalized patients with multiple chronic illnesses (Kangovi and Grande 2020).

Additional information

Funding

This research was supported by the National Institute of Nursing Research of the National Institutes of Health under award number [R01NR015233].

Notes on contributors

Mark D. Fleming

Mark D. Fleming is an anthropologist and Assistant Professor in the School of Public Health at the University of California, Berkeley. His current work focuses on the experiences and political economy of chronic illness, and the contemporary interchange of medical, social and carceral forms of governance. ORCID: 0000-0002-3037-704X. Address Correspondence to: Mark D. Fleming, PhD, MS, School of Public Health, University of California, Berkeley, 2121 Berkeley Way West, Berkeley, CA 94720, USA. Email: [email protected]

Janet K. Shim

Janet K. Shim is Professor of Sociology and Chair of the Department of Social and Behavioral Sciences at the University of California, San Francisco. Her current program of research focuses on two areas: the sociological analysis of health sciences, particularly how social difference and health inequality is dealt with, and the study of healthcare interactions and how they produce unequal outcomes.

Irene Yen

Irene Yen is a Professor of Public Health in the School of Social Sciences, Humanities, and Arts at the University of California, Merced, with courtesy appointment in the Department of Social and Behavioral Sciences, University of California, San Francisco. She is an epidemiologist who studies social determinants of health, including neighborhood, place, race/ethnicity, and social position.

Ariana Thompson-Lastad

Ariana Thompson-Lastad is a Postdoctoral Fellow in the Osher Center for Integrative Medicine at the University of California, San Francisco. Her research focuses on health inequalities, multimodal approaches to chronic pain, innovative models of primary care, and access to integrative medicine.

Nancy J. Burke

Nancy J. Burke is a medical anthropologist and professor of Public Health at the University of California, Merced. Her current research includes a study of syndemic care for high-cost, high-utilizing safety-net patients in the United States, and an ethnography of cancer patient navigation programs in US public hospitals.