Information on health care seems to be showing up everywhere, largely in response to unprecedented demand from consumers. This demand is being fueled in part by new communication technologies, such as the Internet, that make it much easier for consumers to access information. A recent Gallup Poll found that about 90 million Americans regularly use the Internet to access information from the estimated 15,000 health-related Web sites.
A Work Group to Improve Quality Information
Much of the information available to consumers relates to the quality of health care in the United States. And just as the quality of health care itself varies tremendously, so too does the quality of the information. While consumers need to be informed about quality to improve the quality of health care services, they cannot play a constructive role unless the information provided is accurate, timely, and easy to use. The message and the medium for information about quality have improved over time, but much more work needs to be done to get it right.
To that end, a conference entitled Making Quality Count: Helping Consumers Make Better Health Care Choices was sponsored in December 1998 by:
- The Agency for Healthcare Research and Quality (AHRQ, formerly AHCPR).
- The Health Care Financing Administration (HCFA).
- The U.S. Office of Personnel Management (OPM).
This gathering led to the creation in early 1999 of the Work Group on Consumer Health Information, an interdisciplinary group of researchers, purchasers, consumer advocates, and government officials whose charge is to provide information that will support a variety of public- and private-sector efforts aimed at improving the design and implementation of consumer information projects. Throughout 1999 and 2000, this work group produced a number of products, including:
- A detailed inventory of research findings, project profiles, and other information related to the topic.
- A Web site (TalkingQuality.gov) that provides a comprehensive compilation of information, lessons learned, and case examples designed to assist individuals and organizations in providing information on health care quality to consumers.
- A Research and Action Agenda that sets out goals for consumer information, proposes a strategic framework for achieving those goals, and identifies priorities for future research and action.
The goals laid out in this document include system-level goals such as supporting consumer and purchaser choice strategies and consumer protection strategies, ensuring accountability, and motivating improvement—as well as goals for individual consumers, including educating them about the system (e.g., that quality matters) and empowering them to make better lifestyle choices and decisions when choosing among plans, providers, and treatments.
Focusing on the Research and Action Agenda
On December 11-12, 2000, AHRQ, HCFA, and OPM joined with the California HealthCare Foundation (CHCF) and the Centers for Disease Control and Prevention (CDC) in sponsoring Informing Consumers About Health Care Quality: New Directions for Research and Action as a follow-up to the 1998 gathering. The primary objective of this conference was to serve as a forum for a focused discussion, involving key leaders in the field, about the recommendations presented in the Research and Action Agenda. As described below, this document identified research and action priorities in each of five major task areas that comprise the strategic framework for achieving consumer health information goals adopted by the Work Group.
Select for a copy of the complete Research and Action Agenda.
Task 1. Educate and Motivate Consumers to Use Quality Information
The objective of this first task is three-fold:
- First, it aims to educate the public about the issues related to health care quality, i.e., that quality can vary and that various factors affect quality.
- Second, this task focuses on the need to make consumers aware of the availability of information on quality.
- The final goal is to prepare and motivate people to use information to help make decisions that result in better quality of care for themselves and their families.
Research priorities within this task area focus on understanding the impact of consumer information on minority and underserved groups. Action priorities include mobilizing a national consumer education campaign and informing and educating key stakeholder groups.
Task 2. Improve the Supply and Delivery of Consumer-Oriented Quality Information
This task lies at the heart of the Work Group's mission. Once consumers have a compelling reason to use quality information in making better choices, the next step is to present and disseminate the information effectively to ensure its proper use. Many consumers will also require support and assistance in interpreting and using the information they receive.
Research priorities within this task area include understanding why consumers are not receptive to the information on quality that is currently available, with an eye toward learning what will make information salient to these consumers. Action priorities focus on creating an information exchange and clearinghouse resource to support the field.
Task 3. Develop Consumer-Oriented Quality Measures
While notable progress has been made in recent years to develop standardized measures of quality, we must improve the relevance and salience of these measures with respect to meeting consumers' needs. This will require further work in measure development, as well as in identifying a set of standardized performance indicators for health plans and providers that are technically sound (i.e., valid, reliable, and clinically meaningful) and appropriate and meaningful to consumers.
Research priorities within this task area revolve around understanding what domains of quality are most important to consumers, while action priorities include improving the information system infrastructure that underlies quality measurement (e.g., collecting, analyzing, and disseminating data) and reaching consensus on a core set of standardized quality measures that are salient to consumers.
Task 4. Identify the Market Characteristics and Purchasing Strategies That Support Consumer Use of Quality Information
We need to identify the features of a health care market that enable consumers to understand and use optimally information on both quality and costs. In particular, the extent and type of choices consumers can make regarding plans and providers will strongly influence what consumers can actually do with comparative quality information once they have it.
Research priorities within this task area include evaluating the evidence as to whether the consumer choice strategy actually works in practice and whether it is appropriate for all markets and communities. Another priority is understanding the roles that purchasers can play to complement and support consumer efforts for system change and quality improvement.
Task 5. Evaluate the Utility and Impact of Consumer Information Efforts
Ongoing evaluation is essential for understanding and improving the effectiveness of the four tasks above. In addition, continued public and policymaker support (including funding) of consumer information efforts will require evidence that the benefits of these efforts exceed their costs. Such evidence will also be important for continuing to legitimize reporting for consumers on quality in the eyes of advocacy groups and consumers themselves.
Research priorities center on examining the experience of others to gain an understanding of realistic expectations for quality-related consumer information efforts.
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