Study Finds Need for More Consumer-Friendly Health Care Information to Reverse “Troubling” Decline in Use of Existing Health Data by Americans

Washington, D.C. – The Affordable Care Act (ACA) calls for increased public reporting on the cost and quality of health care services to encourage consumers to become more informed and engaged in their own health care decisions. A new study in the February issue of Health Affairs, however, finds a need for more consumer-friendly data to reverse a “troubling trend:” only a small number of Americans use the public information now available, and their numbers are declining.

Experts from the American Institutes for Research (AIR) have co-authored two articles in the current issue of Health Affairs, which focuses on the “The Era of Patient Engagement.” One article offers the results of a review of health-related data now available and compares that with the information patients actually seek. The second article provides a framework for increasing the engagement of patients and their families in health care.

“Surveys over the past decade reflect a troubling trend. A minority of Americans report having seen comparative health care quality information, and the percentage appears to be declining,” wrote authors Jill Mathews Yegian, Pam Dardess and Kristin Carman of AIR and Maribeth Shannon of the California HealthCare Foundation (CHCF) in the article, Engaged Patients Will Need Comparative Physician-Level Quality Data and Information About Their Out-of-Pocket Costs. CHCF provided financial support for the study.

“Realizing the vision of integrated, timely, and relevant health care cost and quality information for consumers requires a clear understanding of consumers’ priorities, consistent attention to principles of effective display of information, and collaboration across organizational boundaries,” they found. They cite, for example, a 2008 survey that found 30 percent of Americans reported “seeing any type of comparative health care quality information in the past year – down from 36 percent in 2006 and 35 in 2004.”

The researchers found that much of the information available reflects the interests of experts and health care professionals rather than the priorities of consumers. For instance, consumer priorities focus on easy-to-understand information about the quality of physicians and services, as well as data about the out-of-pocket expenses consumers face. Currently, consumers tend to “perceive price as a proxy for quality,” the researchers said, noting that individuals covered by insurance are “largely insulated from out-of-pocket expenses” and less concerned with cost.

In Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies, the authors offer a definition of patient and family engagement in health care and propose a framework for understanding the different levels of the health system and the influences that shape them.

“Emerging evidence suggests that engagement can be a pathway toward achieving the goals of better quality of care, greater cost efficiency, and improved population health,” wrote AIR’s Carman, Pam Dardess, and Maureen Maurer, as well as Shoshanna Sofaer of Baruch College of the City University of New York, Karen Adams of the National Quality Forum, and Christine Bechtel and Jennifer Sweeney of the National Partnership for Women and Families.

On February 6, Health Affairs will host a briefing in Washington, D.C., called “New Era of Patient Engagement” to examine the evidence of patient engagement as well as the challenges and opportunities associated with it. The all-day event will feature healthcare policy experts and researchers. AIR’s Carman will participate in a panel on “An Overview of the Evidence and Potential for Patient Engagement,” and Yegian will be on a panel on “Patient Engagement, Costs and Insurance.”

AIR works on multiple projects involving patient and consumer engagement, including a new Center for Patient and Consumer Engagement that will be launched shortly. For more information on AIR’s work in Health, visit, including a video interview with Jill Yegian on health insurance exchanges.

About AIR
Established in 1946, with headquarters in Washington, D.C., the American Institutes for Research (AIR) is a nonpartisan, not-for-profit organization that conducts behavioral and social science research and delivers technical assistance both domestically and internationally in the areas of health, education, and workforce productivity. For more information, visit


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