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Patients’ Views About Patient Engagement and Representation in Healthcare Governance

DeCamp, Matthew MD, PhD; Dukhanin, Vadim MD; Hebert, Lindsay C.; Himmelrich, Sarah; Feeser, Scott MD; Berkowitz, Scott A. MD

doi: 10.1097/JHM-D-18-00152

EXECUTIVE SUMMARY Health systems increasingly engage with patient representatives on their governance boards or with patient and family advisory councils to improve care delivery. Little is known about how general patients regard those engagement activities. The objective of this study was to assess the importance of patient representation. We mailed a survey to 31,687 Medicare beneficiaries attributed to a Medicare accountable care organization. We examined relationships between respondents’ views and their health characteristics and performed thematic analysis on free-text responses. Among 3,061 respondents, the majority believed that having a patient representative (74.1%) or a patient council (74.0%) mattered “some” or “a lot.” The main factors respondents considered in answering were that “patients deserve a voice” (64%) and “having a patient on the [governance] board increases my trust” in this organization (46%). Our analysis of free-text responses illuminated why patient representatives are important, keys to successful engagement, and reasons behind the skepticism. This study indicates that most patients believe representation in health system governance is important, and that realizing its potential requires engagement activities that improve general patients’ awareness of, and interaction with, their representatives.

assistant professor, Johns Hopkins Berman Institute of Bioethics and Division of General Internal Medicine, Johns Hopkins University, Baltimore, Maryland

research associate, Center for Health Services & Outcomes Research, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health

manager, population health program administration, Johns Hopkins HealthCare

director, accountable care operations, Office of Johns Hopkins Physicians

office medical director, Johns Hopkins Community Physicians, Remington Internal Medicine, and medical director, Johns Hopkins Medical Alliance for Patients (JMAP)

senior medical director, accountable care, Office of Johns Hopkins Physicians, executive director, JMAP, and associate professor, Division of Cardiology, Johns Hopkins School of Medicine

For more information regarding the concepts in this article, contact Dr. DeCamp, now at the University of Colorado, at

Supplemental digital content is available for this article. The direct URL citation appears in the printed text and is provided in the HTML and PDF versions of this article on the journal’s website (

The authors declare no conflicts of interest.

© 2019 Foundation of the American College of Healthcare Executives
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