2. Setting the Context: Current Consumer Attitudes Concerning Information on Quality

This chapter reviews consumers' current attitudes with respect to information on quality. Understanding these attitudes is a critical first step for individuals and organizations interested in promoting the use of such information in consumer decision making.

The KFF/AHRQ National Survey: What We Know About Health Care Consumers

The results of a national poll of 2,014 adults conducted between July 31, 2000 and October 9, 2000 by KFF and AHRQ were presented at the meeting, in summary, by Mollyann Brodie, Ph.D., M.S., vice president and director of public opinion and media research at KFF. The survey was developed to learn more about the role that quality information plays in the decisions of health care consumers, and to assess changes over time by comparing the responses to those obtained during a similar survey conducted in 1996.

Reactions to the survey results were given by panelists representing three constituencies:

• Consumers, represented by Charles Inlander, president of the People's Medical Society, New York.
• Sponsors of consumer information, represented by Peter Lee, J.D., president and CEO of the Pacific Business Group on Health, San Francisco, California.
• Plans and providers, represented by Sam Ho, M.D., vice president and corporate medical director for PacifiCare Health Systems, Inc., Santa Ana, California.

Each panelist was charged with commenting on the implications of the poll findings for implementing those elements of the Research and Action Agenda that directly relate to their respective roles, and with suggesting priorities and issues worthy of further discussion.

Finally, this chapter also captures the highlights of the general discussion between Dr. Brodie, the panelists, and the audience related to the poll's findings.

A more complete synopsis of the results can be obtained from the Henry J. Kaiser Family Foundation Web site (www.kff.org) or by calling KFF's Publication Request Line at 1-800-656-4533. Ask for publication No. 3093.

Selected Highlights of the KFF/AHRQ Survey

Dr. Brodie offered a number of conclusions from the survey results that collectively provide a good sense of how consumers make health care decisions, as well as of the role of quality and quality information in those decisions.

The Role of Quality in Health Care Decision Making

Quality of care appears to be important in the choice of a health plan, and consumers appear to be more aware of variations in quality among plans and providers than they were in 1996. More specifically:

• Quality of care is the biggest concern for consumers. Forty-four percent of survey respondents reported that having a health plan that provides high quality care is their biggest concern in choosing a plan, up slightly from 1996. No other factor—including range of benefits, costs of coverage, or choice of doctors—garnered more than 18 percent of the respondents.
• Consumers are increasingly recognizing differences in quality among local plans and providers. Fifty-five percent cited "big differences" in quality among plans, up from 47 percent in 1996. Another 26 percent cited small differences in the quality of plans. Forty percent or more of respondents noted big differences in quality among providers, including hospitals (47 percent), nursing homes (45 percent), specialists (42 percent), and primary care physicians (40 percent).

Defining Quality

Dr. Brodie noted that, while consumers care about quality, they often have trouble defining it. Most define quality as avoiding something "bad" from happening. More specifically:

• When asked the most important factor in determining the quality of health care received, no single factor garnered more than 25 percent of respondents. Qualifications of the doctor ranked first (at 23 percent), but no other factor was cited by more than 7 percent of respondents. Quantifiable data such as "case-mix-adjusted death rates" were barely mentioned as being important in determining quality.
• When judging physician, hospital, and plan quality, consumers appear to be primarily concerned with avoiding something "bad" from happening to them. Seven out of 10 consumers indicated that the number of malpractice suits filed against a physician would tell them "a lot" about the quality of the doctor, while a similar percentage felt that reports of medical errors or mistakes would be an important indicator of hospital and plan quality.
• Relatively few consumers appear interested in ratings of physicians or accreditation of health plans, although roughly half of consumers are interested in patient satisfaction surveys and accreditation when judging hospital quality. Roughly two-thirds of consumers felt that the number of times a doctor or hospital has performed a procedure is an important measure of quality. A patient's experience in getting access to needed care is also relatively important in judging plan quality.
• Consumers seem very concerned about experiencing errors. Nearly half of patients are "very concerned" about an error happening to them or their family when receiving health care in general, with concern highest in the hospital setting. Although, for the vast majority of consumers this concern is not based on recent firsthand experience, 6 percent believe they have personally suffered injury or harm resulting from a medical error in the past year.

How Consumers Make Health Care Decisions

Many consumers believe they have all the information they need to make appropriate health care choices, and the majority of the public says that they would rely "a lot" on friends, families, and trusted physicians for this information. More specifically:

• Many consumers believe they have enough information to make the right choices with respect to health care. Nearly half are "very confident" that they have the information they need to choose physicians and hospitals, with another 25 to 30 percent being "somewhat confident." The percentage of very confident consumers drops slightly with respect to decisions about choosing a particular test, treatment, or prescription medicine. And only 35 percent are very confident in their ability to choose a health plan.
• Friends, family, and physicians clearly have the most influence on consumers when they choose a new doctor, hospital, or health plan. Patient surveys about quality of care come next, followed by information from employers and groups of doctors. Ratings by consumer groups, government agencies, or newspapers and magazines are relatively less influential.
• As in 1996, around one quarter of consumers believe that family and friends do not have enough knowledge and experience to provide good information about health plans.
• If two plans cost the same, consumers are about as likely to choose the plan recommended by friends and family as they are the plan that is rated more highly by experts. Dr. Brodie believes that this figure suggests that friends and family will continue to play a key role in influencing health care choices across the nation.
• Similarly, consumers seeking out information on quality are much more likely to ask friends, family members, coworkers, or a health care professional than to contact official groups or to look at printed information. Roughly 70 percent would seek out advice from these trusted sources, while only 28 percent would be very likely to go online and around 20 percent would be very likely to order a printed booklet, contact a government agency, call a toll-free number, or read a newspaper or magazine.
• While familiarity plays a more important role than expert ratings in selecting doctors and hospitals, the gap has narrowed considerably since 1996. For example, in 1996 three in four consumers would choose a familiar surgeon who was not well rated over an unfamiliar, higher-rated surgeon. By 2000, this figure dropped to 50 percent. A similar, but less dramatic, shift was seen in choosing hospitals.
• The majority (61 percent) of consumers believe that employers are not a good source of information because their main concern is saving the company money on health benefits, compared to 29 percent who say that employers are a good source of information because they examine plans closely when deciding which ones to offer. However, consumers are more likely to say that recommendations or ratings of health providers from employers have "a lot" or "some" influence on their health care choices than recommendations or ratings by consumer groups, government agencies, or newspapers or magazines.

Access to and Use of Information on Quality

Compared to 1996, fewer of today's consumers have seen information on quality, but over 40 percent of those who saw such information have used it. Lack of relevance to their health care needs was cited by the majority of consumers who saw quality information in explaining why they did not use it—at the time they saw the information they did not need to make decisions regarding physicians (67 percent), hospitals (71 percent), or health plans (65 percent). However, more than 80 percent of consumers who saw information about quality believe it would be useful to someone choosing a plan, physician, or hospital. More specifically:

• Just over one quarter of consumers saw any information comparing quality of care, down from 39 percent in 1996. While the reason for this decline is not clear, there does appear to be less marketing and advertising comparing plans now than in the mid-1990s, which was the height of managed competition and a high-growth period for Medicare risk plans.
• Roughly 44 percent of those who saw it—or 12 percent of all consumers—have used information on quality to help make any health care decision within the past year. In 1996, while more consumers reported they had used quality information (15 percent of all consumers), the percentage of those who used the quality information they saw actually increased from the 1996 rate of 38 percent.
• Just over 40 percent of employed individuals have no choice of health plans, and therefore would have no reason to pay attention to information comparing the quality of plans.
• Poor timing and the information's lack of specificity to the consumers' needs appear to be the most important reasons that consumers who did see information on quality chose not to use it.
• In fact, at least 85 percent of consumers who saw information believe it would be useful in choosing health plans (87 percent), physicians (86 percent), or hospitals (85 percent).

The Role of Government in Ensuring Quality

Nearly two-thirds of consumers believe that the government has a role in ensuring quality, and three out of four believe the government should require health care providers to report all serious medical errors. More specifically:

• The 63 percent favoring government involvement represents 28 percent who believe that the government should work directly with providers to improve quality, 21 percent who believe that the government should penalize providers who fail to meet standards, and 12 percent who believe that the government should make sure that information is publicly available.
• Among the minority of individuals (21 percent) who believe that reporting of errors should be done on a voluntary basis, concerns over personal privacy appear to be greater for the privacy of patients (25 percent) than for that of medical staff (17 percent).

The Internet and Information on Health Care Quality

The survey included a handful of questions about the role of the Internet in providing information on health care quality. The results are summarized below:

• While only 7 percent of consumers have obtained information on quality over the Internet, 28 percent would be very likely to go online to get it.
• Consumers trust that their physicians and pharmacists will provide accurate information about prescription drugs; they tend to have lower levels of trust in health Web sites on the Internet and in advertisements for medications.
• One out of three consumers say they do not trust the accuracy of prescription drug information provided by health Web sites. Just 9 percent say they have "a lot" of trust in this information, but 31 percent say they trust Internet sources "somewhat" in providing information about prescription drugs.

These figures should serve as a note of caution for those trying to disseminate information over the Internet. Clearly this source is not a silver bullet for everyone. Rather, it is a "special breed" of consumer who will use and trust Internet data.

Special Populations

Analysis also focused on several special populations, including: seniors, individuals with chronic illness, individuals with special health care needs, and racial and ethnic minorities. In summary:

• Seniors are more likely than those under age 65 to rely on friends or family members and less likely to rely on experts when choosing plans, physicians, and hospitals. However, seniors are less likely than younger Americans to say they would be "very likely" to ask friends, family members, and coworkers for recommendations when comparing the quality of health care or to ask friends and family members for specific recommendations of doctors, hospitals, or health plans. Seniors are more likely than younger Americans to believe they have all the information they need to make the right health care choices, but are less likely to believe there are big differences in the quality of care.
• People with chronic illnesses or disabilities are more likely than those without chronic illnesses or disabilities to be "very concerned" about medical errors or mistakes, and nearly three times more likely to believe that they have experienced a medical error within the last year (14 percent versus 5 percent). Individuals with chronic illnesses or disabilities are more likely than those without these conditions to have sought out information on quality by ordering a booklet or contacting a state agency. This consumer segment may be primed and ready for information on quality.
• People who have difficulty communicating with a provider due to language or cultural difficulties are less likely to feel they have the information they need to make the right health care choices, and are more likely to believe that there are big differences in quality. These individuals are also more likely to say that they have experienced a medical error in the last year.
• African Americans are much more concerned about medical errors than are whites, and are much more likely to believe that the government should be involved in promoting, monitoring, or providing information about quality of care. Hispanics generally fall somewhere in the middle on these issues. African Americans and Hispanics are more likely than whites to believe that the reporting of medical errors should be done on a voluntary basis, due to greater concerns about privacy. That said, the majority of all three ethnic groups believe that reporting should be mandatory.

Challenges and Opportunities

Dr. Brodie concluded by noting that the results of this poll offer both challenges and opportunities for those promoting greater use of information on health care quality in consumer decision making.

The challenge is that most people feel they already have enough information to make the right choices today. Their beliefs and attitudes are deeply held, and have not changed dramatically over time. Consumers tend to rely on the advice of family, friends, and health care professionals to make decisions. For the most part, they have not seen or used information on health care quality.

That said, consumers are increasingly aware of quality differences among providers and plans. Some specific quality information resonated with consumers, and the vast majority of consumers thought that the information they had seen could be useful to someone in making a decision. Also, specific subsets of the population—including those suffering from chronic illnesses—are particularly concerned about medical errors and appear more interested in seeking information about quality. These consumer segments may be attractive first targets for this type of information.

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Implications of the Survey: Panel Responses to the Results

Carol Cronin, M.S.W., an independent consultant and former director of HCFA's Center for Beneficiary Services, served as moderator of a panel that responded to the survey results. She began by noting that the survey itself is a good example of the kind of activity recommended in Tasks 1 and 5 of the Research and Action Agenda, which calls for greater understanding of the impact of consumer information on minority and underserved groups (Task 1) and the development and implementation of surveys to track trends (Task 5).

Ms. Cronin believes that one can view the survey results in two very different ways. The "glass-half-full" view emphasizes the fact that consumers clearly care a lot about quality, as it is their biggest concern in choosing a plan. Consumers are also clearly very aware of quality issues. Almost half cited serious concerns about medical errors, while an increasing percentage of consumers indicated an awareness of variations in quality across plans and providers.

That said, the "glass-half-empty" school of thought recognizes that consumers still rely disproportionately on their family, friends, and personal physicians in making health care choices. Consumers' relationships with and trust in their doctors seem to be regarded as an anchor amidst the chaos of the marketplace. This trust exists even if there is evidence that the physician is not performing at the highest level. Going forward, she believes that this relationship should not be seen as a barrier to getting patients to use information on quality; rather, we must find a way to use the physician-patient relationship as a vehicle for getting information on quality to the consumer.

The Consumer Perspective

As head of the People's Medical Society, Mr. Inlander represents one of the largest consumer advocacy organizations in the country. His initial reaction to the survey results is that little has changed in the last 4 years. He believes strongly that work must continue to ensure that all consumer segments have access to the information that they need. His comments about the survey results included the following:

• Do not get overwhelmed with the issue of medical errors, even though it receives a lot of publicity today. Just as good health is not the absence of disease, good quality health care is not defined by the absence of errors.
• It is no surprise that the most trusted health "professional" is a friend or family member rather than a health care provider, as it is friends and family members who actually experience the health care system. The Internet can play a crucial role in expanding this "back-fence" discussion among friends and family members, as chat rooms and discussion groups can bring together many individuals facing similar problems.
• While consumers want information, they are also skeptical of its reliability, as they worry that sponsors have another agenda.
• Quality advocates are not winning from a public policy perspective. Consumers want but have failed to get passage of a Patient's Bill of Rights, rules on privacy, and development of a National Consumer Data Bank.
• While people still tend to trust their physicians, this trust may be waning. Many patients fail to comply with physician instructions, including filling prescriptions and coming in for follow-up visits. Patients often question whether their physician is doing them any good.

Mr. Inlander believes that while consumers are satisfied with the information they have for choosing a plan or a physician for routine care, they are desperate for information on quality at the time that they need to make decisions about a diagnosis, treatment, or follow-up. He also believes that consumers do not yet know that they should be expecting such information, but once they have it they will migrate to the best-performing institutions if given the appropriate information. But much of the information provided today is not useful; an individual consumer does not care about a plan's immunization rate, but whether he or she will receive a needed immunization.

Mr. Inlander suggests that advocates of quality information for consumers use the media that seniors and other consumers most frequently use, including television, newspapers, and magazines. But he also believes that this information needs to be available in the hospital and at the physician's office, so that patients can get the information they need when they need it-at the bedside. Looking ahead, Mr. Inlander expects awareness and use of information on quality to increase; he believes the decline over the last 4 years is simply a reflection of the fact that 1996 was a time of heightened awareness about quality because of President Clinton's reform plan.

The Sponsor Perspective

Peter Lee of PBGH believes that the survey results suggest that the glass is "two-thirds full" when it comes to consumers' use of information on quality.

The Good News

The positive news in the survey includes the following:

• Large percentages of the population recognize that significant variations exist in the quality of health plans, hospitals, and physicians. Equally important, this recognition has grown significantly since 1996.
• Among those seeing information on quality, virtually all of them believe it would be helpful to someone making a decision. Mr. Lee noted that even though consumers say they are satisfied with the information they have to choose plans and providers, they still want additional information after the fact that makes them feel comfortable with their decisions.
• Over 40 percent of those who saw information used it. This figure is far higher than the 19 percent of those surveyed who said they usually or always use ratings services like Consumer Reports.
• Roughly half of consumers are very concerned about medical errors, which should serve as a wake-up call to the industry. Equally frightening is the fact that 1 in 20 consumers—and 1 in 7 with chronic illnesses—believe that they have personally suffered as a result of errors. Whether true or not, the perception of having been a victim of an error is real. This concern can be used to open the door for consumers to become aware of other issues related to quality. That said, Mr. Lee is unsure why consumers who are so concerned about medical errors still prefer to see a familiar surgeon, even when confronted with data that show a better one nearby.

Mr. Lee suggested that the decline in the percentage of consumers seeing information on quality is related to the fact that Medicare risk plans were marketing aggressively at the time of the last survey in 1996.

The Role of Key Groups

Mr. Lee outlined the role of key groups in promoting the use of information on quality in health care decision making. First and foremost, he recommends making this data relevant to physicians, since they play such an important role in influencing consumers. He also noted that the survey findings bring home the important role employers play as sources of information on quality for many consumers.

While one question was worded in such a way as to lead to responses of "distrust," in other questions the vast majority of consumers indicate that employers are influential in their decision making; consumers indicated greater trust in data from an employer than from most other sources, including magazines, the government, and consumer groups.

Challenges for the Future

Mr. Lee highlighted a handful of survey results that suggest challenges for the future:

• Different kinds of consumers have different needs with respect to information on quality. For example, individuals with chronic illnesses have a greater concern about quality, while African Americans focus more on medical errors. Those providing information on quality must pay attention to these different areas of concern.
• Many consumers do not use information because it comes at the wrong time, or because it is not relevant to their particular situation or condition. National, aggregated data that is only available around open enrollment is not enough. Data must be available at all times, and it must be relevant to the individual's situation.
• If the data are not relevant to physicians, there is no way to reach consumers. Physicians must be convinced to talk with patients in a peer-to-peer relationship about information on the quality performance of plans and providers.

The Plan and Provider Perspective

Sam Ho, M.D., of PacifiCare, represents both health plans and providers.

Meaningful Progress Being Made

Dr. Ho believes that the survey results show meaningful progress over the last 4 years:

• Consumers are more aware of quality and quality variations, and they still regard quality as the biggest factor in choosing plans.
• When confronted with both expert ratings and recommendations from a family member or friend, consumers are now as likely to rely on expert ratings as the trusted advisor's recommendation.
• The vast majority of consumers who have seen information on quality think that it would be useful in making a decision.

More Work Needs to Be Done

However, more work needs to be done in developing and disseminating information at the provider level. Equally important is a greater effort to reward those plans and providers that improve quality. Unfortunately, price remains the dominant factor for purchasers in their choice of plans and providers. Any incentive for quality is typically in the form of a "withhold"—in other words, plans and providers are penalized for not meeting targets.

Dr. Ho advocated a different approach, one in which plans and providers are rewarded for exceeding targets. At present, there is no reward to providers or health plans for improving access to specialists, preventive care, or care for the chronically ill.

Dr. Ho believes that the plan or provider that is the first to innovate risks tremendous backlash from consumers, who tend to want broad networks that offer tremendous choice of providers. These consumers are largely immune from the price of health care, and therefore may react negatively to programs that might cut costs (and improve quality) by creating organized delivery networks that offer less choice.

Looking to the Future

Looking forward, Dr. Ho sees a need to develop better provider-level measures. The limited set being used by consumers today—including the number of malpractice suits—does not really measure the ability of a physician to communicate or to provide timely preventive care, both of which are important to consumers. In addition, Dr. Ho believes that health plans can be an important source of information for consumers on the relative quality of providers. PacifiCare has been playing this role by providing regular reports on quality at the medical group level. Consumers have responded enthusiastically, with a number even "voting with their feet" by switching to better-performing medical groups. For their part, the groups themselves have used the information for quality improvement purposes.

Summary

In summary, Dr. Ho is encouraged by the progress suggested in the survey. But he also urged a redoubling of effort toward the priority areas raised in the Research and Action Agenda, including a campaign to raise awareness that quality matters and efforts to improve the ubiquity of information, so that it is available 24 hours a day/7 days a week. Finally, he called for the development of reliable, relevant measures of provider quality, and for the implementation of rewards and incentives for plans and providers that improve quality. Today, innovative plans and providers are at risk of consumer backlash and adverse selection; there needs to be a business case for these organizations to engage themselves in quality measurement and improvement.

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General Discussion About the Survey Results

After the panelists' presentations, the audience and panelists engaged in a discussion of the survey results. Highlights from this discussion are presented below.

Comments on Consumer Demand for Information on Quality

• Consumers who do not have a choice of health plans should still be concerned about the relative quality of physicians, hospitals, and other providers, since individual health plans generally offer fairly broad provider panels.
• Different consumer segments respond differently to information on quality. For example, regular users of the health care system are more likely to report errors, and are less likely to rely on friends and family members to influence their choice of plan, provider, or treatment. If aware of evidence-based guidelines, these regular health care users are also more likely to push to get appropriate services—such as beta blockers after a heart attack—regardless of how well a particular health system is reported to perform in providing those services.

Comments on Supplying Information on Quality to Consumers

• Information needs to be disseminated to individuals through a wide variety of vehicles. While there is no question that new technologies for dissemination should be explored, most people will want to gain access to information on quality through familiar sources that they trust. For many, these sources are friends, family members, and physicians. But others prefer television and the media, or even new technologies such as the Internet.
• Because the timing of information is critical, purchasers, plans, and other sponsors of information on quality must do all they can to keep information up to date, and to make it available when it is needed. Dr. Ho noted that PacifiCare currently updates its information at least twice a year, and plans more frequent updates in the future. The ultimate goal must be "anytime, anyplace" access to the information.

Comments on Special Populations

• Low-income individuals who are on Medicaid or who do not have insurance are less likely to have a regular physician, let alone one that they trust. These individuals are more concerned about cost than quality, and therefore less likely than the average consumer to rely on friends and family for advice, or to see and use information on quality. Language and cultural barriers also make it more difficult for this population to make use of information on quality.
• Providing appropriate information to individuals with disabilities is a big challenge. Because of their disabilities, these individuals may have very different experiences than a nondisabled individual with the same condition. They may also have more trouble getting access to needed services and information because of their disabilities. For example, people who are deaf have a higher rate of HIV/AIDS infection because they do not have the same access to information provided through television and radio. Individuals in wheelchairs have higher rates of cancer because they have a difficult time getting cancer screenings.

Comments on Creating a "Market" for Quality Care

• With respect to incentives, Dr. Ho urged the creation of a 2 percent bonus pool that is over and above regular premium payments, rather than a 2-percent withhold that holds back funds from regular payments. (Mr. Lee noted that most plans in California price their policies as if they are only going to get 98 percent of the premium anyway, so that the withhold effectively serves as a bonus.) Both Mr. Lee and Dr. Ho suggested that more purchasers need to find ways of generating market share for the best-performing plans, perhaps by introducing tiered pricing that would steer employees to the better plans.
• Even if not all consumers use information on quality, simply getting the data out there should help to spur improvement. Mr. Inlander highlighted the experience in Pennsylvania, where the reporting of outcomes for bypass surgery resulted in the closure of six poor-performing programs, as well as quality improvement in a number of other programs. Ms. Cronin noted that a similar situation occurred in New York, where hospitals responded to information on surgery outcomes both by improving quality and by marketing their strong performance. Mr. Lee cautioned, however, that various rankings can be inconsistent.
• Considerable disagreement existed over the appropriateness of mandatory reporting of medical errors. At one end, Dr. Ho believes that significant tort reform is needed to limit the liability of providers, plans, and employers before mandatory reporting would be appropriate. For his part, Mr. Inlander believes in mandatory reporting of all errors, including minor ones, as such reporting is the only way to create accountability and spur improvements in quality. (That said, Mr. Inlander believes that minor errors need not necessarily be put into the public domain.) Finally, Mr. Lee falls somewhere between these two views. He noted that consumer surveys suggest that mandatory reporting raises significant concerns about patient privacy (though less about staff privacy).

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