We undertook focus groups, interviews, and an online survey with health care consumers as part of a recent project to assist purchasers in communicating more effectively about health care evidence and quality. Most of the consumers were ages 18–64; had health insurance through a current employer; and had taken part in making decisions about health insurance coverage for themselves, their spouse, or someone else. We found many of these consumers’ beliefs, values, and knowledge to be at odds with what policy makers prescribe as evidencebased health care. Few consumers understood terms such as “medical evidence” or “quality guidelines.” Most believed that more care meant higher-quality, better care. The gaps in knowledge and misconceptions point to serious challenges in engaging consumers in evidence-based decision making. M any studies have shown that some health care provided in the United States is inappropriate, inefficient, and unsafe. Moreover, as the rise in health care costs continues to outstrip wages and growth in other sectors of the economy, it is critically important to increase the quality and value of health care. Passage of the Patient Protection and Affordable Care Act of 2010 has now laid the groundwork for major reforms, including greater use of evidence-based medicine, shared decision making, comparative effectiveness research, evidence-based benefit design, and transparency of cost and quality information. We refer to these diverse efforts as evidence-based health care. Althoughmuch attention has been focused on the roles of governments, employers, insurers, and providers in evidence-based health care, less attention has been paid to the critical role of consumers. Their attitudes and beliefs about evidence-based health care, and their understanding and acceptance of it, will help determine its success or failure. If consumers don’t understand it or reject it, or if they see it as an invalid basis for making decisions about providers and treatments, the most ambitious goals of this movement may fail. Increasingly, consumers are being asked to use evidence to manage chronic conditions, choose between treatment regimens, and select providers and health plans. In some respects, consumers are rising to the challenge. Research shows that decision aids, which provide information about options and outcomes, can help increase consumers’ confidence with decision making and improve their understanding and knowledge of treatment options. If consumers are more involved in decision making generally and self-management of health conditions, the results can be improved adherence to treatment, increased use of screening, increased patient satisfaction, better health outcomes, and lower health care costs. At the same time, many consumers’ values, beliefs, and behaviors remain rooted in traditional expectations about the doctor-patient relationship and the medical care system. The dominant role of physicians in determining doi: 10.1377/hlthaff.2009.0296
HEALTH AFFAIRS 29, NO. 7 (2010): 1400–1406 ©2010 Project HOPE— The People-to-People Health Foundation, Inc. Kristin L. Carman (kcarman@ air.org) is a codirector of health policy and research at the American Institutes for Research in Washington, D.C. Maureen Maurer is a research analyst at the American Institutes for Research in Chapel Hill, North Carolina. Jill Mathews Yegian is director of research and evaluation at the California HealthCare Foundation, in Oakland. Pamela Dardess is a senior research scientist at the American Institutes for Research in Chapel Hill. Jeanne McGee is a principal at McGee and Evers Consulting, in Vancouver, Washington. Mark Evers is a principal at McGee and Evers Consulting. Karen O. Marlo is director of benchmarking and analysis at the Institute on Health Care Costs and Solutions, National Business Group on Health, in Washington, D.C. 1400 HEALTH AFFAIRS JULY 2010 29:7 Web First at GEORGE E BROWN JR LIBRARY on September 14, 2011 Health Affairs by content.healthaffairs.org Downloaded from patient care has been a fact of medical care delivery for many decades. Therefore, many consumers may find it difficult to move into a more active and accountable role in which they are expected to understand and weigh multiple pieces of complex and potentially conflicting evidence. The purpose of this study was to determine how the concept of making health care decisions based on evidence of effectiveness could be translated into language that consumers would understand and embrace.We conducted this research as part of the development of a “communication toolkit” to help employers communicate more effectively about evidence-based health care. In conducting this research,we identified a number of specific values, beliefs, and misconceptions among consumers that present major challenges to efforts to engage them in evidence-based health care decision making. Study Data And Methods We used qualitative research methods including focus groups, in-depth interviews with stakeholders, and cognitive interviews with employees.
Cognitive interviews are individual interviews that explore how well consumers understood the materials and what aspects of the materials needed improvement. The project also used quantitative, online survey research methods to assess consumers’ values, beliefs, and experiences with evidence-based health care. Details are available in an online Appendix. How consumers understand and react to evidence-based health care is notwell known. Thus, a reviewof the literature and qualitative methods were most appropriate at the beginning of our research.We used quantitativemethods to assess specific topics that our qualitative research showed would be helpful to employers. Literature Review And Qualitative Methods Our research included reviewing published literature and other material such as technical reports and white papers; collecting and reviewingmaterials from organizations that communicate with consumers about health care; and interviewing forty employer intermediaries such as human resources staff, stakeholders, and experts. In addition, we conducted four focus groups with a total of thirty-four consumers in August and September 2006 to explore their understanding of the components of evidencebased health care and health care decision making, and to obtain their reactions to different ways of conveying information about evidencebased health care. Between March and December 2007, we conducted one-on-one, two-hour, in-person cognitive interviews with fifty-seven employees to explore how well consumers understood the concepts of evidence-based health care, the consumers’ reactions to the use of evidence of effectiveness in decision making, and their preferred sources of health care information.
The focus-group and interview participants were people ages 18–64 who had health insurance through a current employer and who had taken part in making decisions about coverage for themselves, their spouse, or someone else. We audiotaped all focus groups and interviews. We transcribed the focus-group tapes and generated extensive notes for the interviews, analyzing these to identify key themes. Weemployed a variety ofwell-established techniques to draw conclusions from the data, such as identifying patterns, assessing the plausibility of findings, and noting relationships between patterns.We tested and confirmed our findings by looking for exceptions and alternative explanations. Online Survey And Analysis In a related effort, the National Business Group on Health commissioned an online survey in September 2007 of 1,558 employees. This survey used the Greenfield Online panel, a convenience sample recruited primarily from the Internet. Findings from our project’s qualitative research were used to ask additional questions about attitudes and behaviors regarding health care, health information needs, preferred sources of information, and health care decisions. Respondents were ages 22–69, employed at least part time by a firm with at least 2,000 employees, insured through an employeror unionsponsored health plan, and functioned as a key health care decision maker for their household. All panelmemberswhomet the selection criteria were eligible to respond to the survey. The survey was discontinued after we reached a sample size of approximately 1,500. Unless otherwise noted, the findings presented here are consistent within the qualitative methods and between the qualitative and quantitative methods. The findings express recurring issues and themes stated by consumers across the range of methods used (Exhibit 1). Study Limitations Overall, because of recruitment methods and selection criteria, the project findings overrepresent people who were employed, particularly by large firms; who were insured; and who identified themselves as responsible for health care decision making. As a result, we would expect that our study population is consistently biased toward a “best case” scenario: that individuals understand and value evidence-based health care. Thus, our findings may reflect a more optimistic assessment of JULY 2010 29:7 HEALTH AFFAIRS 1401 at GEORGE E BROWN JR LIBRARY on September 14, 2011 Health Affairs by content.healthaffairs.org Downloaded from consumer engagement than would be found in the broader U.S. population. Study Findings The key finding from focus groups, interviews, and the online survey is that there is a fundamental disconnect between the central tenets of evidence-based health care and the knowledge, values, and beliefs held by many consumers. For health care experts, variation—in quality among health care providers, the evidence base regarding therapies, and the effectiveness and cost-effectiveness of treatment options—is a well-established fact of the health care delivery system, documented extensively in the published literature and well understood after years of careful study. Yet such concepts are unfamiliar to many American.
