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


Task 1: Educate and Motivate Consumers to Use Quality Information

Overview

If we are to achieve the various goals for consumer information, people will have to make the effort to review information on the performance of health care organizations, draw conclusions about the options available to them, and use those conclusions as inputs in their decisions. None of those things can or will happen if consumers are not aware that quality is an issue that should concern them, that information on quality is available, and that they can use this information to make better decisions for themselves and their families.

Of course, it is not realistic to seek the attention of all consumers in the marketplace. Nor is it practical to try to educate everyone at once. Social marketing theory would suggest that the first step to an effective educational campaign would be to identify and reach out to those segments of the population that are most likely to be receptive to information about health care quality and would be most willing to act upon that information.

Once these "targets" are identified, the next principal task is to figure out how to stimulate and sustain the interest of these and other key groups of consumers so that they will be motivated to use quality information appropriately. Our ability to complete this task is fundamental to achieving the overall goals of a consumer information strategy. If a meaningful percentage of consumers do not become engaged, health care organizations will have no reason to be concerned about public accountability or how they perform relative to their competition. This would signify the failure of a market-based reform effort.

The Current Situation

There are several large obstacles facing consumer information initiatives. One key issue is the fact that many people—particularly those outside of the mainstream—do not regard themselves as "consumers" in the health care arena. Without that mindset, people are not likely to be receptive to using information on health care quality; its promise and implications would have little meaning to them. Education about health care quality may play an important role in helping people take on the mantle of consumers and develop a different perspective on their relationship with health plans and providers.

A second challenge is the lack of awareness on the part of consumers in the communities in which information on health care quality is available. Perhaps more importantly, to the extent they are aware that the information exists, many people donít understand why they should care or how they could use the information. To date, sponsors and health care organizations have focused on developing appropriate, valid measures and devising the best methods for collecting and analyzing data. But it doesnít matter how much information is available or how "good" it is if people do not want to see it.

A third issue relates to identifying who would be most receptive to reviewing and using information on health care quality. While researchers and sponsors have made assumptions about certain segments in the past, there is a need to explore this issue as objectively as possible so that educational efforts are not hampered by false presumptions about the audience.

A fourth concern is the low level of trust that consumers have in those who could prepare them for information about health care quality. Surveys of consumers suggest that they do not regard either employers or health plan organizations as reliable sources of information about quality, probably because these sponsors may have something to gain by influencing peopleís perception of the data. Other disinterested "messengers" of the quality message are likely to meet with a better reception, but itís not clear who those messengers should be.

What We Need to Know: Priorities for Research

To prepare the public to understand and use information on health care quality effectively, we need to learn more about the following issues:

1. Who is the audience?

  • What specific population groups should be the focus of the next generation of education and awareness efforts?
  • Should we adopt a strategy for targeting opinion leaders and early adopters? If so, how can we identify those segments?
  • What groups are most aware of quality-related risks? What factors lead consumers to be concerned about quality (e.g., health status, caretaker for others, age)?
  • What groups are least aware of the risks associated with poor quality? What can be done to educate these groups?
  • Which groups are most motivated to use performance information? What motivates them (e.g., a sense of control, fear)? Which groups are least motivated and why?
  • Are parents of children and caregivers of the elderly more willing to act upon information than other segments of the population?
  • What factors (e.g., age, income, education, ethnicity) are associated with consumers incorporating information about quality into their choices?
  • What percentage of the elderly population has the cognitive and literacy skills to use comparative information when making choices?
  • Which groups donít have choices with respect to health plans or providers? How can quality information be useful to them?

2. What is the message?

  • What do various segments of the public currently understand about health care quality?
  • Do consumers understand the risks they face in the current health care system? What are the risks they perceive?
  • What effect has the recent news about medical errors had on the publicís perception of health care quality? How can the heightened concern over patient safety issues be used to stimulate broader public interest in quality issues?
  • What messages would fit with the popular discourse about health care quality?
  • What theories of behavior change and communication should guide the development of messages?
  • What process should be used for determining the core messages needed to motivate consumer interest in quality information and for tailoring these messages to various segments of the population?
  • How should messages be evaluated for effectiveness in reaching various segments of the population?

3. Who should be the messenger?

  • Who does the public in general trust to inform them about quality? Who do specific groups trust (especially those least motivated already)?
  • What are the characteristics of groups that could take on the role of "opinion leader" or "champion"?
  • What kind of spokespeople would be most effective in legitimizing the quality message (much like C. Everett Koop legitimized HIV education)?
  • Which media would be most effective with which segments of the population?

4. What are realistic expectations for educating and motivating consumers about quality and what is a reasonable timeframe?

  • How long does it take for a simple message like "quality matters" or "quality varies" to get through?
  • Is time the issue or is the fundamental message the wrong one?
  • What level of resources do we need, and how much repetition?

5. What can we learn from other public education and awareness campaigns both inside and outside the realm of health care? (e.g., the FDAís nutrition campaign and HIV education)?

  • What are the factors that contribute to success? How can these factors be replicated in the context of health care quality information?
  • What has been the cause of failure? What are the implications for the marketing of health care quality information?

6. How does learning about quality affect minority, low literate, and underserved populations? Do they stand to gain the same benefits as other groups?

What We Need to Do: Priorities for Action

It may take several years to answer the research questions laid out above. However, we should not delay action until we have a clear resolution, not only because it unrealistic to do so but also because the efforts we make now will play a vital role in allowing us to investigate a variety of possible answers in the real world.

In the context of this task, key actions can be summarized in two words: educate and support. In addition to educating the public directly in order to build awareness and understanding, we need to develop educational programs that target key stakeholders and the media. These latter groups will also need help in serving as alternative sources of information, which means they must have access to data, tools, and the resources (i.e., skills and knowledgeable people) that will enable them to adapt information to their specific needs.

1. Conduct an ongoing, biannual national survey to identify and monitor trends in consumer awareness, knowledge, attitudes, and practices related to quality information.

  • Build on the seminal national survey sponsored by the Kaiser Family Foundation and AHRQ in October 1996, which documented baseline attitudes and preferences of American consumers regarding the role of quality information. Take steps to ensure that the surveyed sample includes hard-to-reach, low literate people and that the instrument is appropriate for capturing the views of individuals in that segment of the population.
  • As a first step in this direction, the Kaiser Family Foundation is again partnering with AHRQ to conduct a second national survey, to update the results of the October 1996 poll, in advance of the December 2000 conference. The results of this survey will be presented at the conference., along with the results of a similar statewide survey conducted in California by the California HealthCare Foundation.

2. Develop and implement a comprehensive, national consumer education campaign to raise public awareness about the importance of quality and motivate consumer demand for quality information.

  • Coordinate with existing education campaigns such as the consumer education and outreach initiative recently undertaken by the California HealthCare Foundation. This campaign is targeting key opinion leaders to inform and educate them about health care quality issues.
  • Enlist consumer advocacy organizations (e.g., the Consumer Coalition for Quality Health Care, AARP, National Association of Child Advocates, Family Voices, etc.) to provide assistance and support based on their own efforts to educate consumers about quality and motivate them to demand better information.
  • To involve specific patient and disease organizations, enlist the support and cooperation of the National Health Council, which is currently working on an information campaign on managed care for people with chronic illnesses and their families.
  • Articulate a clear vision of the expected outcomes of such a campaign (in order to know if it has been effective) and demand ongoing evaluation for accountability and continued improvement.
  • Develop a strategy for engaging specific audiences (including ethnic communities and vulnerable populations) in order to tailor effective messages for these groups.

3. Conduct educational efforts aimed at key stakeholder groups to inform them of the same issues we seek to communicate to consumers so that they can support and reinforce the educational process. Key stakeholder groups to target include:

  • Health plans.
  • Purchasers.
  • Physicians, hospitals, nurses, and other providers.
  • Federal, state and local policy makers, including legislators and administrative officials.
  • Foundations that consider health care to be part of their mission.

4. Conduct educational efforts aimed at informing and training the media to effectively communicate about quality to the public.

  • Build on the recommendations of the IOM Quality of Health Care in America (QHCA) Communications Workshop (April 8, 1999) regarding the role of the media in communicating about quality of care issues.
  • Work with leading schools of journalism to develop and implement a training curriculum for educating new and mid-career journalists about health care quality issues.
  • Develop and implement a media relations campaign to convene conferences for journalists, distribute background papers, produce talking points, etc.
  • Conduct briefing sessions on quality issues at major annual journalism meetings in order to reach out to editors. Do the same for reporters at regional meetings.

5. Support health plans and provider organizations in their efforts to develop educational information on various aspects of quality that individual providers can share with their patients.

  • Develop a model information campaign including boilerplate text that provider organizations could adapt to communicate with patients.
  • Identify a trusted vehicle (e.g., the IOM) that could provide an independent stamp of approval on information that meets minimal standards of accuracy, fairness, and objectivity.

Return to Contents

Task 2: Improve the Supply and Delivery of Consumer-Oriented Quality Information

Overview

One of the greatest challenges of the consumer information strategy lies in developing and disseminating information that health care consumers can and will actually use. Assuming we are able to capture their attention, there will be a limited window of opportunity to prove to people that reviewing this information is worth their time and effort. If the information is perceived as unduly cumbersome and too distant from their everyday concerns, consumers will eventually move on to other solutions, most likely through legislative and regulatory means.

To make performance information useful, sponsors will have to develop a better understanding of the information needs of different segments of health care consumers. What resonates with one group of people may have little meaning for others. Defining the subgroups within their audience will enable sponsors to adapt the contents of performance reports so that they are salient to people with different perspectives, different needs for health care, and different ways of understanding and processing information.

In addition, sponsors need to improve their ability to present information in a way that people can understand quickly and easily. Few consumers are willing to invest the effort required to interpret the technical data offered in many quality reports. At the same time, it is important to retain the level of accuracy reflected in a more detailed approach to statistical information, particularly when clinical measures are involved. The challenge is to balance the need for clarity and "user-friendliness" with the need to portray performance as fairly, appropriately, and completely as possible.

Finally, the success of this strategy is not just a function of the salience of the information contained in a performance report. While the contents plays a critical role, an equally important factor is how effectively sponsors get information on health care quality to the people who need it when they need it. The best report has little value if no one sees it. Moreover, we must develop ways to help people use the data; without some kind of personal support, many consumers will be unable to apply the information they get to their own circumstances.

Current Status

This stage in the development of performance reporting can best be characterized as one of experimentation. Sponsors are trying out different formats for presenting quality scores as well as different approaches to consolidating data, with some emphasizing the details while others attempt to aggregate everything into a handful of manageable scores. As part of these experiments, a few sponsors are doing their best to evaluate the effectiveness of their approach, although some are more rigorous in their evaluation than others.

Generally speaking, reports are designed with the assumption that "one size fits all," but there are some efforts to distinguish between the needs and abilities of different segments. Some Medicaid programs, for example, are simplifying the standard bar graph presentations to make the data more accessible for their audience.

Regarding the delivery of information, dissemination strategies tend to focus around open enrollment periods, since that is when most people choose their health plans. However, one downside of this strategy is that it is often wasteful, in that sponsors often spend a great deal of money on distributing information that only a few people look at. This has contributed to a sense of frustration on the part of sponsors, especially employers. Also, this strategy offers no guidance for sponsors whose audiences may be making decisions at any time (such as Medicare beneficiaries).

On the other hand, no effective dissemination strategy has been proposed for sponsors that have developed information on other levels of the health care system. It is not yet clear how best to get information about hospitals, medical groups, and other providers into the hands of the people who need it most.

What We Need to Know: Priorities for Research

To improve the salience and effectiveness of health care quality information, we need to gain a better understanding of the following areas:

  • Content and Context.
  • Scoring and Presentation.
  • Dissemination and Support.

Information Content and Context

  1. Why arenít consumers receptive to the information on quality that is currently available?
  2. How much and what content is needed to make quality information salient to consumers?
    • What do consumers need to understand about health care quality? How will this be determined?
    • What are the concepts they need?
    • How much background do they need?
    • How much do consumers need to understand about managed care?
    • Are quality messages more compelling when they are linked to consumersí concerns about managed care?
    • Does the use of a negative decision frame affect the usefulness of the information for consumers?
    • Are quality messages more compelling when coupled with descriptions of serious risks? That is, are scare tactics effective?
    • Do consumers need to understand their role in quality improvement?
    • Should the material presented take a point of view, i.e., be more interpretative and prescriptive rather than simply descriptive in its message to consumers?
  3. What do different population segments need to know?
    • How can we tailor content to different segments (e.g., vulnerable populations, minority groups)?

Information Scoring and Presentation

  1. Which presentation formats work best for which consumers?
    • Is there an order in which information needs to be offered?
    • Are stories an effective way to communicate information about quality? If so, how can we use stories to deliver the information typically conveyed through tables and/or graphs?
    • What is the best way of providing benchmarking information?
    • Are trend data useful for consumers? If so, what is the best way of providing data that show changes in performance over time?
    • Which scoring approaches are measurably more effective with consumers?
    • Do absolute scores work better than relative scores for informing consumers about differences in plan and provider performance?
    • Are roll-up methods more useful to consumers than individual scores? If so, is there a point at which this strategy becomes counter-productive?
    • Should roll-ups weigh all measures equally or not?
    • How much of a difference (in performance results) makes a difference to people? What do people pay attention to? Do they pay attention to the things they should pay attention to? Do they pay more attention when thereís a high degree of difference? What do consumers do when faced with minimal variation?
  2. How does the presentation of information influence its usefulness for decision making?
    • If we can make quality information more evaluable, are consumers more likely to give it greater weight in their decisions? If so, how can we make the information more evaluable?

Information Dissemination and Support

  1. What channels and media are best for delivering information on health care quality?
    • What are the advantages and disadvantages of different media (print, video, computer, etc.)?
    • What is the most cost-effective way to deliver print materials?
    • Who are the information intermediaries that would be most effective in this role?
    • What are the components of an effective, ongoing campaign to prepare consumers, promote the information, deliver it, and support its use? That is, how can sponsors consciously link their educational efforts to the distribution and support of quality information?
  2. What timing is best? When do people need to have the information in order for it to influence their decisions?
  3. How much and what kinds of decision support do people need? Does the need vary for different segments of the population?
  4. Which intermediaries are best at which functions (e.g., identifying people who need information; legitimizing the information; disseminating the information; helping comprehension; and helping in application to personal circumstances/decisions)?
    • What is the added value of having information intermediaries available to assist with decision making? Are consumers able to make better decisions?
  5. Can providers serve as a source of information about quality? How can they help reach consumers? What information would it be appropriate for providers to share?
  6. What role can new technologies play in introducing and communicating quality information to the public? What does this mean for those segments of the population that do not have access to such technologies?
  7. What can we learn from other disciplines about dissemination and support of complex information?
  8. What is a good decision? How does the consumer define it?
  9. How do consumers respond to uniformly poor quality results, i.e., information that suggests that none of their options are good? What are the implications for future efforts and for the usefulness of the information?

What We Need to Do: Priorities for Action

While these research questions are being explored, two kinds of activities can play a key role in facilitating the task of improving the supply and delivery of information on health care quality. The first kind of activity revolves around information sharing. For example, sponsors need an easy way to learn from each other and from the research community about what works best and with whom. Organizations in the quality measurement and reporting field also should open the door to lessons from related fields of inquiry, many of which will have implications for the consumer information strategy.

The second kind of activity involves outreach to consumers and organizations that serve them, including the media, both to learn more about their needs and to develop more effective ways of connecting them with the information they need.

1. Create an information exchange/clearinghouse resource to actively monitor, inventory, and disseminate best practices, research findings, resources for implementation, etc.

  • The Work Group on Consumer Health Information is one potential vehicle for this function, having developed a core group of researchers and practice leaders that together have overseen the production of the "TalkingQuality" web site for informing sponsors of quality reporting projects about key design and implementation issues. The Work Group has also functioned as a network for linking individuals and organizations in the field, to facilitate information exchange and collaboration.

2. Develop culturally and linguistically appropriate outreach and information strategies for targeted ethnic and other groups.

  • Enlist support of groups like the Summit Health Institute to develop ethnographic papers so that we can better understand the cultural context and language use in specific communities.
  • Educate and train advocates of vulnerable groups how they can use quality measures to monitor health care delivery in their communities.

3. Develop a consumer-oriented information infrastructure at the national, State, and local level to provide intermediary assistance, protection, and advocacy for consumers.

  • Specify need to make this a public-private effort.
  • Encourage coordination with existing efforts, such as the Center for Medicare Education, SHIP (State Health Insurance Counseling Programs), etc.

4. Conduct and support media training in quality issues and information.

5. Generate a series of analytical papers that flesh out the implications of findings from other fields (such as education, communications, social marketing, etc.) for this field.

  • This might be a particularly relevant role for the Work Group, given the experience and diversity of its members.

6. Incorporate the experiences and research findings from other fields into conferences and meetings on health care quality measurement and reporting.

  • This was a major objective of the December 1998 national conference which led to the creation of the Work Group. The follow-on conference in 2000 will build on this progress to provide a forum for considering the recommendations of this agenda as well as the progress and developments of other related initiatives.

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Task 3: Develop Consumer-Oriented Quality Measures

Overview

Implementation of Tasks 1 and 2 are critical to creating and meeting consumer demand for health care quality information. But even if consumers are motivated to use quality information in making decisions, the success of the strategy will depend on our ability to accurately and fairly measure the quality of care provided by health plans and providers in ways that are meaningful and useful to consumers.

Current Situation

Although the state of the science of quality measurement is still very much in its infancy, major progress has been made in the last 10 years to develop standardized measurement systems that can be used to assess the performance of health plans and providers. By far the greatest strides have been at the level of the health plan, most notably through the efforts of the National Committee for Quality Assurance (NCQA) in overseeing the continued evolution and refinement of the Health Plan Employer Data and Information Set (HEDIS).

More recently, the Agency for Healthcare Research and Quality (AHRQ, formerly AHCPR) has enhanced the assessment of quality from the consumersí point of view through its development and support of the Consumer Assessment of Health Plans (CAHPS®) survey, now the national standard for health plan member surveys.

Other efforts to develop quality measures include those of:

  • The Foundation for Accountability (FACCT).
  • The Joint Commission on Accreditation of Healthcare Organizations (JCAHO).
  • The American Hospital Association.
  • The American Medical Association.
  • Numerous initiatives by specialty societies, academic research centers, and private consulting organizations.

Despite the progress that has been made, most of the validated quality measures have been oriented either to use by purchasers or by plans and providers for internal assessment and improvement. Notable exceptions include the CAHPS survey and the measurement sets developed by FACCT, which were designed to focus on the information needs of consumers.

Another area that is substantially underdeveloped is the measurement of quality for medical groups and individual health care providers, which is the unit of analysis most highly relevant to most consumers. Since a comparison at the health plan level can wash out differences in provider performance, there is a growing interest in assessing quality at the level where variations are most likely to be evident. Moreover, concerns about the quality of care of nursing homes and home health agencies point to a need to expand the current scope of consumer information efforts. Finally, the recent national focus on the problem of medical errors suggests that increased monitoring and assessment of patient safety indicators also may be of substantial interest to consumers.

What We Need to Know: Priorities for Research

A number of important research questions underlie the development of rigorous measures of quality that are relevant to consumers and cost-effective to collect. Among the most important are the following:

  1. What domains of quality are most important to consumers?
  2. What kinds of health care services are they most concerned about?
  3. How do we overcome barriers to measuring the quality of provider groups and individual providers?
    • Build on the findings and recommendations of the September 1999 U.S. General Accounting Officeís report on physician report cards(2), citing both technical and political obstacles such as: problems of attribution, inadequacies of risk adjustment methods, small numbers to support statistical validity, patient and provider privacy concerns, etc.
  4. What measures are effective at discriminating among health plans and providers and still useful for describing the performance of the health care system as a whole(i.e., in the interest of parsimony, which performance measures can serve multiple purposes)?
  5. What quality indicators are most relevant to different groups of consumers, for different purposes? Which work across groups? Which are specific to particular groups?
  6. What are the best ways to measure and report on the experiences of the relative small group of people who most need and use the health care system?
  7. In the context of measuring and reporting on quality, how can we accurately account for differences in the patient mix so that providers and plans are not penalized for providing care for higher-risk groups (in terms of illness, socioeconomic status, or racial/ethnic differences)?
  8. How can we develop consumer-oriented quality measures in the following areas?
    • Behavioral health care.
    • Nursing home care.
    • Home health care.

What We Need to Do: Priorities for Action

A number of important quality measurement initiatives are currently underway that can provide the foundation for improving the supply and availability of quality measures relevant to consumers. The following actions are recommended as steps for building on these existing initiatives to assure timely implementation of consumer-relevant quality measures:

  1. Reward investment in the underlying information system infrastructure of health plans and providers in order to improve the efficiency and effectiveness of quality measurement.
    • Build on the recommendations of the recent NCQA report on "A Road Map for Information Systems: Evolving Systems to Support Performance Measurement". (This report outlines an agenda for the health care industry to develop the information system capacity needed to provide quality of care information cost-effectively over time, and in ways that serve multiple audiences for both accountability and improvement purposes.)
    • Note also the IOMís forthcoming report on "Using Information Technology to Improve the Quality of Care," which will present a synthesis of findings from a September 29, 1999 workshop and recommendations from the IOM Quality of Health Care in America (QHCA) Committee.
  2. Encourage research and development efforts to engage non-researchers and end-users in the development of consumer-relevant measures that are valid and reliable across population groups.
    • Incorporate these perspectives into the specific measures development and testing projects sponsored by AHRQ, PMCC(3), NCQA, JCAHO, AMA, FACCT, and other groups developing measures.
    • Encourage sponsoring groups to initiate and facilitate an ongoing dialogue at the strategic level between and among consumers, advocates, and health care professionals.
  3. Encourage leading national health information initiatives to reach consensus on a set of standardized quality indicators that are salient to consumers, with the understanding that this set may evolve over time.
    • The newly established Quality Forum and its Framework Board represent a promising vehicle for developing consensus among numerous stakeholder groups.
    • Other groups in a position to offer leadership to the industry on measurement standardization include the PMCC and the Foundation for Accountability.
  4. Coordinate the efforts of Federal and State agencies and other funders to support infrastructure development and training that will enable safety net providers to collect and report reliable data.

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