Informing Consumers About Health Care Quality: New Directions for Research and Action

Held December 11-12, 2000, this conference was designed to be a forum for a focused discussion involving key leaders in the field about the recommendations presented in the Research and Action Agenda of the Work Group for Consumer Health Information.

The overall goal of the conference was to identify specific strategies for implementing research and action priorities as they relate to four major consumer sectors.

Sponsors were the Agency for Healthcare Research and Quality (AHRQ), California HealthCare Foundation, Centers for Disease Control and Prevention (CDC), and Office of Personnel Management.

Contents

Background
Conference Objectives and Organization

Background

In December 1998, the Health Care Financing Administration (HCFA), with support from the Office of Personnel Management (OPM) and the Agency for Healthcare Research and Quality (AHRQ, formerly AHCPR), sponsored a national invitational conference entitled Making Quality Count: Helping Consumers Make Better Health Care Choices. That conference provided a forum for leading consumer information researchers and project sponsors to share their latest findings and results from efforts to communicate health care quality information to consumers.

The Making Quality Count Conference also led to the creation in early 1999 of the Work Group on Consumer Health Information (Work Group), an interdisciplinary group of consumer advocates, purchasers, researchers, and government officials. The Work Group charge was to provide information that supported a variety of public and private sector efforts aimed at improving the design and implementation of consumer information projects.

The Work Group was cosponsored by HCFA, AHRQ, and OPM. In addition to its Research and Action Agenda, the Work Group has developed a Web site. Called "TalkingQuality.gov," it will provide a tool to assist various groups in identifying and gaining access to multiple, current resources that can help them plan and implement consumer-oriented health care quality information projects, and related activities.

Over the past year, the Work Group has developed a "Research and Action Agenda" that proposes a statement of goals and an overall strategic framework to guide both research and action in the evolving field of consumer health care quality information. This proposed agenda has been widely circulated to a diverse group of individuals and organizations engaged in efforts related to consumer health information, with the hope of stimulating further discussion and action based on its recommendations.

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Conference Objectives and Organization

This conference was designed to provide a forum for a focused discussion involving key leaders in the field about the recommendations presented in the Work Group’s "Research and Action Agenda." The overall goal of the conference was to identify specific strategies for implementing research and action priorities as they relate to four major consumer sectors:

• Consumers employed in the public and private sectors.
• Older consumers.
• Consumers with special health care needs (chronic conditions, disabilities, etc.).
• Consumers with special communication needs (related to culture and literacy).

To set the stage for a focused discussion of research and action priorities within each of these sectors, the opening plenary session began with an overview of the Research and Action Agenda. This overview included a brief presentation of the following five major task areas that comprise the strategic framework for achieving consumer health information goals adopted by the Work Group:

• Task 1: Educate and Motivate Consumers to Use Quality Information.
• Task 2: Improve the Supply and Delivery of Consumer-Oriented Quality Information.
• Task 3: Develop Consumer-Oriented Quality Measures.
• Task 4: Identify the Market Characteristics and Purchasing Strategies that Support Consumer Use of Quality Information.
• Task 5: Evaluate the Utility and Impact of Consumer Information Efforts.

To establish a context for understanding current consumer attitudes and views on health care quality issues, the results of a recent national consumer poll by the Kaiser Family Foundation and AHRQ were presented. The Kaiser Foundation/AHRQ poll updates results of a similar, widely-cited poll conducted in 1996. The findings of this national poll were considered along with the results of a similar statewide survey conducted in California by the California HealthCare Foundation.

Presentation of the poll findings was followed by a reactor panel consisting of individuals representing three key perspectives related to consumer health information initiatives:

• Those producing the information (sponsors).
• Those receiving the information (consumers).
• Those whose quality performance was being assessed (health plans and providers).

Following the opening plenary sessions, four breakout sessions addressed the current status and future direction of research and action in each of the four major consumer sectors identified above:

• Consumers employed in the public and private sectors.
• Older consumers.
• Consumers with special health care needs (chronic conditions, disabilities, etc.).
• Consumers with special communication needs (related to culture and literacy).

Because all four breakout sessions were presented twice, participants were able to attend two of the four sessions offered.

Before the conference, participants could read background papers by session leaders for each breakout session. These background papers synthesize the state-of-the-art of research and action as it relates to the five major task areas of the Research and Action Agenda. Each breakout included a brief review of the paper by the session leader, followed by comments from a discussant panel of representatives of sponsors, consumers, and plans/providers related to the specific consumer focus of the breakout.

At the end of the conference, a plenary was convened when breakout session leaders reported on the issues and recommendations discussed in their respective sessions. The plenary included an open, facilitated discussion of priorities and next steps.

Invited Participants

This conference was targeted at opinion leaders drawn from the following categories. Budget and space constraints limited participants to about 200 people. Key groups included:

• Consumer groups representing those receiving information in all four major consumer sectors (employed consumers, older consumers, consumers with special health care needs and consumers with special communication needs).
• Sponsor organizations representing those compiling and disseminating information among each of the four consumer sectors, including public and private employers, purchasing coalitions, Medicare, Medicaid agencies, and State Children's Health Insurance Programs.
• Health plan and provider organizations representing those who are being measured and evaluated.
• National organizations created to promote and coordinate consumer health information activities, such as the National Forum for Health Care Quality Measurement and Reporting, and the Institute of Medicine’s Quality of Health Care in America Project.
• Federal Agencies collaborating through the Quality Interagency Coordinating Committee (QuIC) such as AHRQ, the Health Services and Resources Administration (HRSA), the Centers for Disease Control (CDC), and the Office of Personnel Management.
• Foundations, academic institutions, research organizations, and consulting groups actively engaged in supporting the development, implementation, and evaluation of consumer health information activities.

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Current as of May 2001