Proposed Agenda for Research and Action. Informing Consumers About Health Care Quality

The Research and Action Agenda 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. The agenda was developed by the federally-sponsored Work Group on Consumer Health Information. It served as the basis for the conference on "Informing Consumers About Health Care Quality: New Directions for Research and Action," held December 11-12, 2000.

Sponsors of the Work Group are the Agency for Healthcare Research and Quality (AHRQ), Health Care Financing Administration (HCFA), and the Office of Personnel Management (OPM).

Contents

Summary
Introduction and Overview
Goals for Informing Consumers About Health Care Quality
Strategic Framework for Achieving Consumer Information Goals
   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-Relevant Quality Measures
   Task 4: Identify the Market Characteristics and PurchasingStrategies that
   Support Consumer Use of Quality Information
   Task 5: Evaluate the Utility and Impact of Consumer Information Efforts
Addendum A. About the Work Group on Consumer Health Information
Addendum B. Members of the Work Group

Summary

Purpose of the Paper

Efforts to provide consumers with information on the quality of health care have grown rapidly in recent years. While these efforts continue to multiply, many important challenges and questions remain regarding how to effectively motivate consumers to use quality information and how to improve the content, presentation, distribution, and evaluation of the information that is communicated.

This agenda proposes an overall strategic framework to guide both needed research and action in the evolving field of consumer health information. It was developed by the federally-sponsored Work Group on Consumer Health Information as the basis for the conference on "Informing Consumers About Health Care Quality: New Directions for Research and Action," to be held on December 11-12, 2000.

The Work Group was created in early 1999 to provide information to support a variety of public and private sector efforts aimed at improving the communication of health care quality information to consumers. To fulfill its mission, the Work Group embarked on two projects:

• Web Site: TalkingQuality.gov is intended to be a comprehensive resource for sponsors of quality information projects. The Web site represents an effort to compile and organize what we currently know about quality reporting to consumers, with extensive references to state-of-the-art practices, recent research, and related resources.
• Research and Action Agenda: The Research and Action Agenda complements the Web site by identifying what we still need to know and to do if we are to succeed in communicating quality information effectively to consumers.

To identify strategies for implementing research and action priorities in specific segments of the population, the Work Group sponsors have also commissioned a set of papers that focus more narrowly on how the challenges and opportunities raised in this paper relate to the health care quality information needs of the following consumer sectors:

• Consumers employed in the public and private sectors.
• Older consumers.
• Consumers with special health care needs (e.g., chronic conditions, disabilities).
• Consumers with special communication needs (e.g., cultural and literacy barriers).

These papers are part of the package of documents distributed with this Agenda in preparation for the December conference. They are also available on the conference Web site. The conference itself will be an opportunity for participants to share their thoughts on key issues for implementing the Research and Action Agenda in each of the four consumer sectors.

Strategic Framework for Achieving Consumer Health Information Goals

The purpose of providing consumers with information on health care quality is intended to motivate a number of positive changes in the health care system as a whole as well as at the level of the individual consumer. Desired system-level changes include:

• Improved quality.
• Affordability.
• Access as a result of more informed decisions made by consumers, purchasers, plans, providers, and policymakers.

At the level of the individual, information on health care quality can help educate and empower consumers to make the decisions that are best for themselves and their families, leading to improved health status and outcomes over time.

To achieve these goals, continued research and action are needed within an overall national strategy composed of five major tasks:

1. Educate and Motivate Consumers to Use Quality Information: The first part of this task is to educate the general public about quality of care issues, i.e., why consumers should be concerned, what information is available, and how this information can be used to make better decisions. The second part focuses on the need to motivate consumers to incorporate information on quality into their decision-making process.
2. Improve the Supply and Delivery of Consumer-Oriented Quality Information: Once the climate for understanding and using quality information has been created, relevant information must be presented and disseminated effectively, accompanied by adequate support and assistance to help ensure its proper use.
3. Develop Consumer-Relevant Quality Measures: Although notable progress has been made in recent years to develop standardized measures of quality, further work is needed to develop and test quality indicators that are relevant and salient to consumers, particularly as they apply to assessing individual providers.
4. Identify the Market Characteristics and Purchasing Strategies that Support Consumer Use of Quality Information: The extent and type of choices consumers have available to them will strongly influence what consumers can actually do with comparative quality information once they have it. Further research is needed to identify the features of a health care market that enable consumers to understand and use information effectively.
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, and for ensuring the public and policymakers that the benefits of these efforts exceed their costs.

Priorities for Research and Action

Given the large number of research questions and action steps suggested in this Research and Action Agenda, the Work Group recognizes that it would not be feasible to pursue everything at once. To begin to address this concern, the members agreed that there would be some value to proposing a set of questions and actions that should be addressed first in each of the five major task areas outlined above, either because of their importance overall or because they are prerequisites for other research or actions.

Table 1 (Text Version) lists research and action priorities identified by the Work Group, organized by the tasks described above. A summary of the major topics is provided in the following table for easy reference. Further context for each task area and topic is included in the body of the report.

Select for Text Version

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Introduction and Overview

Efforts to provide consumers with information about the quality of health care are growing rapidly in multiple sectors throughout the United States. Many large employers, local buying coalitions, and government purchasers (such as Medicare and State Medicaid agencies) are now distributing "report cards" on the quality of health care organizations (mostly plans and hospitals) in an effort to provide employees and beneficiaries with better information for making health care decisions. At the same time, an increasing number of health plan companies are issuing their own report cards to subscribers comparing the quality of care delivered by providers in their networks. National and local media organizations have established annual magazine reports on the quality of health maintenance organizations (HMOs), hospitals, and doctors.

What began 10 years ago with only a few experiments to publicly disclose comparative quality information has today grown into a budding commercial industry. This rapid evolution has been marked most recently by the emergence of for-profit Internet companies publishing on-line health plan and provider report cards available to anyone with access to the World Wide Web.

While the recent explosive growth in the availability of health care quality information for consumers has the potential to confer many benefits to both individual consumers and the health care system as a whole, it has also given rise to a number of important issues that demand serious attention. Although a social movement and field of practice have clearly emerged, the overall goals and desired outcomes of this activity are not always clear.

Even though consumer health information initiatives are proliferating, they are often disjointed and at times redundant or even conflicting in the comparative performance data they present. Few formal evaluations and little empirical evidence exist to suggest what methods of information presentation and distribution are most helpful to consumers when making decisions about their health plan, provider, or treatment options. For its part, the health care industry remains largely nervous and skeptical of efforts to assess performance and hold health plans and providers accountable through public information disclosure. And consumers, as the intended primary audience for this information, often appear uninterested and unmotivated to use report cards when they receive them.

This proposed Research and Action Agenda represents an effort to bring a clearly needed statement of goals and overall strategic framework to guide both research and action in the evolving field of consumer health information. It was developed by the Work Group on Consumer Health Information, an interdisciplinary group of academicians, researchers and experienced public and private project sponsors representing a range of disciplines. The purpose of the Work Group on Consumer Health Information is to provide information to support a variety of public and private sector efforts aimed at improving the communication of health care quality information to consumers. It was formed in early 1999 following a major national conference held in December 1998 to review the state-of-the-art and to identify future needs and opportunities for advancing the field of consumer health information (1).

To fulfill its charge, the Work Group embarked on two projects:

• Web Site: TalkingQuality.org is intended to be a comprehensive resource for sponsors of quality information projects. The Web site represents an effort to compile and organize what we currently know about quality reporting, with extensive references to state-of-the art practices, recent research, and related resources.
• Research and Action Agenda: The Research and Action Agenda complements the Web site in that it points to what we still need to know and to do if we are to succeed in communicating quality information effectively to consumers.

The Work Group is co-sponsored by:

• The Health Care Financing Administration (HCFA).
• The Agency for Healthcare Research and Quality (AHRQ, formerly AHCPR).
• The Office of Personnel Management (OPM).

Access Addendums A and B for more information on the composition, funding, and major activities of the Work Group.

The Purpose of this Paper

This discussion paper is intended for consideration by a diverse group of organizations and individuals in a position to learn from and consider its recommendations. The strategic framework and specific research and action topics recommended in this paper will form the basis of the New Directions for Research and Action conference to be held on December 11-12, 2000.

This conference, sponsored by AHRQ, HCFA, OPM, the Centers for Disease Control and Prevention, and the California HealthCare Foundation, is expected to build on the progress made at the December 1998 conference and the recommendations presented by the Work Group in this paper to help formulate a broader consensus on the research and actions needed to advance consumer health information goals.

While this paper emphasizes how consumers as a whole can use information, the Work Group recognizes that public information has limited (and perhaps even negative) value in communities where the choices are severely restricted or all choices are poor. The Agenda does acknowledge this challenge as one of many issues in need of further research, but it is a broad document that was not intended to address the problems of specific segments of the population. To compensate for this, the Work Group sponsors commissioned a set of papers that focus more narrowly on how the issues raised in this paper relate to the information and health care needs of certain stakeholders, specifically:

• Consumers employed in the public and private sectors.
• Older consumers.
• Consumers with special health care needs (e.g., chronic conditions, disabilities).
• Consumers with special communication needs (e.g., cultural and literacy barriers).

These papers are part of the package of documents distributed with this Agenda in preparation for the December conference. They are also available on the conference Web site, which can be accessed through the Web site of the Quality Interagency Coordination Task Force (QuIC) at www.quic.gov. The conference itself will be an opportunity for participants to share their thoughts on key issues for implementing the Research and Action Agenda in each of the four stakeholder groups.

The Work Group has invited representatives of the following groups to participate in the December conference:

• Consumer groups representing those receiving information in all four major consumer sectors (employed consumers, older consumers, and consumers with special health care needs and 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 Child Health Insurance Programs (SCHIP).
• 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, the Quality Interagency Coordinating Task Force (QuIC), and the Institute of Medicine’s Quality of Health Care in America Project.
• Federal regulatory and research agencies, such as AHRQ, the Health Services and Resources Administration (HRSA), and the Centers for Disease Control and Prevention (CDC).
• Foundations, academic institutions, research organizations, and consulting groups actively engaged in supporting the development, implementation, and evaluation of consumer health information activities.

This proposed Agenda begins with a discussion of the major goals and intended outcomes of efforts to provide consumers with information on health care quality. It then outlines a strategic framework for achieving these goals, consisting of five major task areas. A discussion of each major task area follows, including recommendations for topics in need of further research and development, as well as specific actions and initiatives outside of research that should be taken to advance national consumer health quality information efforts.

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Goals for Informing Consumers About Health Care Quality

To develop an effective agenda for research and action, project sponsors, regulators, policy makers, and researchers must share a common view of what they hope to accomplish by producing information on health care quality for consumers. In the absence of a clear set of goals for health care quality information, there is no way to determine what kinds of research questions and systematic actions to focus on, let alone what priorities should be attached to specific tasks and objectives.

Most consumer health information initiatives are intended to bring about changes at both the macro and micro levels. Changes at the macro-level are related to the health care system as a whole as well as to the organizations operating within the system. These changes tend to be long-term in nature, although some anticipated changes may be detected fairly quickly. For instance, in many markets where information has been released to the public, health plans have moved quickly to identify and improve upon any publicized weaknesses in their performance. Changes at the micro-level refer to changes in the behavior of individuals, which are expected to occur over time as people adapt to new information and new health care environments.

In evaluating progress towards these goals, it is important to recognize that no changes at either level are imminent. People are usually slow to embrace behavioral changes, and the pace of change for organizations is limited by changes in attitude and perspective at the individual level. Moreover, information alone is only one of many factors that affect behavior and decision making. While certain interim goals (such as increased awareness of the information and its purpose) can be assessed in the short-term, it would be unreasonable to expect health quality information to change the market overnight.

This section lays out a set of goals that have been endorsed by the Work Group on Consumer Health Information as central for guiding the development and implementation of a research and action agenda for consumer health care quality information.

Macro-Level Goals: System and Organization Change

At the level of the health care system, consumer information initiatives have two primary goals, as discussed below.

• Goal 1: To support a consumer choice strategy that aims to improve the overall health care system. One of the central goals of consumer information projects is to support a consumer choice strategy for reforming the American health care system. In this market-oriented strategy, consumers with good information about their options are able to select high-quality health plans and providers that are best able to recognize and meet their health care needs. This value-sensitive selection by informed consumers creates powerful incentives for organizations to compete on performance and to focus on making care more effective, efficient, and accessible, resulting in improvements throughout the entire system.

  In brief, the consumer choice strategy relies on the following premise:

  • The quality and cost performance (i.e., the value) of different health plans and providers varies substantially.
  • The performance of the overall health system will improve if plans and providers have sufficiently strong incentives to improve their performance.
  • Well-informed consumers can use data on quality and costs to choose the health care organizations that they believe will perform better in meeting their needs.
  • Market share is an important incentive for competing plans and providers. The potential for performance-driven success in the marketplace is what will spur plans and providers to change their behavior, eventually leading to positive changes throughout the industry.

  Clearly, a reasonable amount of relevant, timely, and accurate information on the quality of health care organizations is a crucial ingredient of the consumer choice strategy. It is the key to enabling consumers to make sound decisions regarding their selection of health plans and providers, rewarding strong performers with higher enrollment (or more patients) and presumably greater revenues. It is also critical to efforts by the industry to identify and address specific areas in need of improvement.

• Goal 2: To support the steps taken by regulators and policy makers to protect the public health by imposing minimum performance standards for health care organizations. While the current overall policy direction in the U.S. health care system is firmly oriented toward the consumer choice strategy outlined above, members of the Work Group acknowledge that other complementary strategies also are important to achieving the goals of improved quality, affordability, and access. One way to help assure at least a basic level of quality care is to rely on the traditional consumer-protection approach of regulatory agencies and policy makers, which emphasizes the use of minimum standards for quality (primarily through mechanisms such as accreditation and state regulatory and licensing programs).

Consumer-oriented information can help to build public awareness of and support for such initiatives. Government agencies and lawmakers can also use the information to assess the impact of their policies and identify any health care organizations in need of further investigation.

At the level of organizations operating within the system, consumer information initiatives have the following goals:

• Goal 3: To support the efforts of purchasers to incorporate considerations of quality into their contracting decisions. In recent years, it has become increasingly common for purchasers (i.e., employers, Medicare, Medicaid agencies, labor trust funds, etc.) to use their contracting clout to encourage health care organizations to improve their quality. This value-based purchasing strategy has played a major role in spurring plans and providers to deliver both better care and better information about their processes and outcomes. Programs to share information on quality with employees and beneficiaries enable purchasers to display their commitment to these issues and educate consumers to focus on key elements of performance.

• Goal 4: To encourage a sense of public accountability on the part of health care organizations and individual physicians. Another major goal of consumer information initiatives is to shed light on an industry that has traditionally operated in a "black box," relying on the deeply rooted faith of consumers in their doctors. As the health care industry has matured, consumers have become increasingly more distanced from those who provide this most intimate and vital of services. This has resulted in a loss of trust and a growing concern that the industry has misplaced its sense of obligation to the public. In addition to helping people learn more about the capabilities of their plans and providers, consumer information forces health care organizations to look at themselves from the perspective of their customers.

• Goal 5: To spur efforts to improve the quality of health care services. Building upon a renewed feeling of accountability, a further objective of publicly available consumer information is to encourage plans and providers to take action to improve their performance in ways that matter to consumers. By reporting measures of quality that consumers understand and value, performance reports are intended to help health care organizations and physicians pinpoint their areas of weakness so that they may take action to identify and fix the problems that are most important to consumers.

  While they may be expressed in different terms, or not expressed at all, these large-scale goals underlie most of the health care quality information projects taking place today. Furthermore, they are consistent with the kinds of changes occurring in other industries that have been subject to public accountability and reporting efforts. For instance, information on the environment has played a critical role in making companies accountable for the impact they have. Similarly, the standardized display of nutritional information has changed the eating and purchasing habits of millions of consumers, as well as the practices of food manufacturers.

  For the most part, these goals are long term in nature. No one expects health care organizations—let alone the industry as a whole—to change overnight. However, purchasers, regulators, researchers, and health care organizations themselves are beginning to attribute certain positive changes in policies, practices, and performance to the presence of publicly reported information. These anecdotal improvements are a testament to the power of information, at least in the short term.

Micro-Level Goals: The Individual Consumer

The following goals reflect the anticipated effects of health quality information initiatives on individual consumers:

• Goal 1: To empower consumers to make the decisions that are best for themselves and their families.

  Good information on the quality of health care organizations can help consumers make the decisions that are best for themselves and their families. With ready access to comparative data on their options, patients should be better equipped to evaluate and choose the plans and providers that can meet their health care needs most effectively. Eventually, they should also become more capable of making informed judgments about treatment options. Armed with information that offers insights into the strengths and weaknesses of various choices, they will also be able to communicate more effectively with health care providers about their problems and concerns. While information alone may not be enough to change the ways in which people relate to their plans and providers, it is a crucial component of any effort to create a "consumer" mindset in the health care arena.

• Goal 2: To educate consumers about the health care system.

  Information on the performance of providers and plans should help people gain a better understanding of how the health care system works, what it can do, and what it cannot do, which is important if we want consumers to develop and maintain reasonable expectations. In addition, quality reports provide a vehicle for teaching consumers how to use and navigate the health care system effectively and efficiently. This will encourage them to become more proactive in their relationships with plans and providers, lessening feelings of frustration and allowing them to feel more in control, both of which would contribute to a more positive experience with the health care system.

• Goal 3: To reinforce the idea that consumers should think about the quality of health care services in the same way that they consider costs and coverage.

  Surveys of consumers suggest that they are strongly influenced by information on costs and benefits when choosing among plans or provider organizations. By revealing differences across competing plans and providers, validating positive impressions, and corroborating any negative judgments they may have formed, performance information drives home the importance of incorporating quality concerns into health care-related decisions. This is related to the short-term goal of many public information initiatives to build awareness of the idea that quality varies and that consumers can make better choices.

• Goal 4: To reassure consumers about the quality of care they receive.

  Over time, access to information on quality should help to improve consumers’ feelings of satisfaction with the care they receive and with the system as a whole, primarily by validating their own positive experiences. By pointing out areas where performance is universally good across all providers or plans, performance reports will help to build public confidence in the system.

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Strategic Framework for Achieving Consumer Information Goals

The Work Group on Consumer Health Information has identified five major task areas it considers central to achieving the various consumer health information goals outlined in the previous section. Taken together, these task areas form an overall strategic framework for the specific research and action priorities recommended by the Work Group. These task areas are all interrelated, as outlined below:

• 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 care for themselves and their families.

• 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 in order to assure its proper use. Many consumers will also require support and assistance in interpreting and using the information they receive.

• 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 consumer needs. This will require further work in measurement development as well as an effort to identify a set of standardized performance indicators for health plans and providers that are both technically sound (valid, reliable, and clinically meaningful) and appropriate and meaningful 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 information on both quality and costs optimally. 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.

• 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 consumer reporting on quality in the eyes of advocacy groups and consumers themselves.

The Work Group’s proposed Research and Action Agenda is organized according to these five major task areas. The following sections present research and action priorities identified by the Work Group for each task area.

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