Study Finds Critical Challenges to Consumers’ Understanding and Use of Evidence-Based Health Care

Washington, D.C. – Misconceptions and a lack of knowledge about health care have created a fundamental disconnect between the central tenets of evidence-based health care and the values and attitudes of many who receive health services, according to the results of a study that is being released online by Health Affairs on June 3, and will also appear in its upcoming July edition.

AIR conducted the study, Evidence That Consumers Are Skeptical About Evidence-Based Health Care, with funding from the California HealthCare Foundation (CHCF), collaborating with the National Business Group on Health (The Business Group).

While the use of evidence in health care decision-making is central to achieving high quality, effective, and affordable care, the study identified misconceptions, values and beliefs, and behaviors that present pointed challenges to efforts to engage consumers in evidence-based decision-making. These include skepticism about guidelines, reluctance to question care, and gaps in knowledge about basic concepts. “Consumers believe that ‘more’ care is ‘better’ care and that new types of care and treatment are always better—and it’s hard for them to accept evidence to the contrary,” stated Dr. Kristin L. Carman, co-director of Health Policy and Research Analysis at AIR in Washington, D.C.

The study used a mixed-methods approach that included focus groups and one-on-one interviews as well as an online survey with more than 1,500 individuals. All participants had health coverage through an employer or a union-sponsored health plan.

Specific findings from the study include:

• There is a fundamental disconnect between the central tenets of evidence-based health care and the knowledge, values, and beliefs held by many consumers. Participants believed that more care and newer care is better, that newer treatment is improved treatment, and that more costly care represents care that is clinically superior.
• There are critical gaps in consumer knowledge that challenge ongoing efforts to encourage consumers to use evidence-based health care. Participants were unfamiliar with or confused about terms such as “medical evidence,” “quality guidelines,” and “quality standards.” In addition, they assumed that their health care providers always based decisions on medical evidence, but only 34 percent of participants ever recalled having a physician discuss scientific research with them. Participants also found it hard to believe that providers could deliver truly substandard care – particularly their own providers.
• Consumers are skeptical about the motives behind evidence-based health care, which affects their acceptance of evidence-based decision-making in health care. Participants perceived medical guidelines to be too rigid, interfering with providers’ abilities to tailor care to the needs of individual patients and taking away their sense of choice in the health care process. Participants also perceived these guidelines as a means to protect physicians from potential lawsuits or as tactics invoked to deny care.
• Many consumers rely heavily on their doctors for information, interpretation, and guidance on treatment options, and are often reluctant to question or challenge what the doctor advises. Among online participants, 55 percent said they had never taken notes during a medical appointment, and 28 percent said they had never brought a question to ask their doctor.

AIR conducted the research while developing the “Communication Toolkit: Using Information to Get High Quality Care.”

The Toolkit is a collection of customizable materials designed to support employers and other organizations in communicating with consumers about key concepts in evidence-based health care and consumer engagement. “Consumers deserve the right care, at the right time, at an affordable price – and they are less likely to receive it if they reject the use of evidence, guidelines, and quality reports as a valid basis for making decisions about their treatments and providers. With the Toolkit, we hope to make a compelling case for basing decisions about medical care on research and evidence about what works for whom,” stated Jill Mathews Yegian, Director, Research and Evaluation, for CHCF.

The Toolkit materials take the concepts of making health care decisions based on evidence and translate them into practical, actionable language, with topics including: understanding the basics of health care quality; cost and quality; tips for getting good quality care; and using the Internet to find health information. The materials for consumers are complemented by information for employers and other organizations about how to communicate effectively with consumers. “The tools and lessons within the toolkit are designed to help employers and others understand and address the challenges they face in communicating with consumers about evidence-based medicine,” said Helen Darling, President of the Business Group, the nonprofit membership organization of large employers, which supported the development of the Toolkit and maintains it online so it is publicly available.

Following up on the research to develop the Communication Toolkit, AIR currently is conducting a project to increase the Toolkit’s dissemination, implementation, and effectiveness. The goals of the project include: (1) Developing and implementing a strategic marketing plan that combines in-person and electronic outreach approaches; (2) Increasing awareness of the Toolkit with employers and other potential audiences; (3) Assisting organizations in using the Toolkit by providing broad technical assistance through webinars and other outreach; (4) Implementing and evaluating the Toolkit materials with a collaborative of organizations in California that includes participation from employers, purchasing entities, and insurers, and that represents outreach to nearly 2.3 million insured lives; and (5) Updating the Toolkit to incorporate lessons learned.

The study was authored by Kristin Carman of AIR; Jill Mathews Yegian, California HealthCare Foundation; Maureen Maurer, AIR; Pamela Dardess, AIR; Jeanne McGee and Mark Evers of McGee and Evers Consulting; and Karen O. Marlo, National Business Group on Health.

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 www.air.org.