What Information Do Consumers Want and Need?: A synthesis of research to date, plus interviews with health plan managers and consumer advocates.

Abstract

Prologue: When T.S. Eliot asked, “Where is the knowledge we have lost in information?” he was referring to the peculiar fact that gains in information do not always lead to greater knowledge; indeed, too much information, or information of the wrong kind, can erode knowledge. Many consumers confront such a challenge when choosing a health plan: There is often an abundance of information available, but much of it is irrelevant to the decision-making process. This should come as no surprise, for, as Susan Edgman-Levitan and Paul Cleary note in this paper, little is actually known about what kinds of information consumers need to make decisions. Here they review recent findings in this area and conclude with recommendations to improve the accessibility and usefulness of health plan information for consumers. Few are better qualified for this task than these authors. They have both devoted considerable portions of their professional Uves to issues surrounding patients, consumers, and health care information. Their expertise was recently recognized by the Agency for Health Care Policy and Research when they were selected as coprincipal investigators for that agency's Consumer Assessment of Health Plans Study. Edgman-Levitan is executive director of the Picker Institute in Boston and an instructor at Harvard Medical School. Cleary, who has published more than 150 journal articles and book chapters, is professor of health policy at Harvard with joint appointments in the Medical School and the School of Public Health. He also is editor of the Milbank Quarterly and research director at the Picker Institute. Abstract: This paper reviews information from surveys and focus group studies about how consumers define high-quality care and the types of information they want when making decisions about which health plan to join. The authors also interviewed consumer advocacy groups and persons responsible for disseminating health plan information to Medicare enrollees in various types of managed care plans to learn about the types of plan information that Medicare enrollees most often request. They describe the types of information that should be made available to consumers and the challenges involved in making this information understandable and useful.