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.
J Healthc Manag. 2019 Sep-Oct;64(5):332-346. doi: 10.1097/JHM-D-18-00152.
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.
医疗体系越来越多地让患者代表参与其管理委员会，或设立患者和家庭咨询委员会，以改善医疗服务的提供。然而，对于普通患者如何看待这些参与活动，我们知之甚少。本研究旨在评估患者代表性的重要性。我们向隶属于医疗保险责任制医疗组织的 31687 名医疗保险受益人邮寄了一份调查。我们考察了受访者观点与其健康特征之间的关系，并对自由文本回复进行了主题分析。在 3061 名受访者中，大多数人认为有患者代表（74.1%）或患者委员会（74.0%）“有些”或“非常”重要。受访者在回答时主要考虑的因素是“患者应该有发言权”（64%）和“在[管理]委员会中有患者代表增加了我对该组织的信任”（46%）。我们对自由文本回复的分析阐明了为什么患者代表很重要，以及成功参与的关键因素和怀疑背后的原因。本研究表明，大多数患者认为在医疗体系治理中具有代表性很重要，而要发挥其潜力，需要开展让普通患者提高对其代表的认识和互动的参与活动。
