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CHAPTER SEVEN


Strengthening the Hand of Consumers

Because consumers are the intended beneficiaries of health care, their needs should be of utmost importance. Economically, consumers are important because they expend the largest single amount of money for health care. Thus, mobilizing the full power of the marketplace to improve health care quality requires that the power of the individual consumer be maximized. Stronger consumers also are better able to carry out their dual roles and responsibilities as purchaser and patient. The Commission recommends several steps to strengthen consumers' ability to fulfil their roles and responsibilities. These include: implementing ongoing consumer education, providing consumers with reliable information on quality that meets their purchasing needs, creating effective information dissemination mechanisms, providing assistance to those consumers who require help in making informed health care decisions, seeking opportunities for consumer involvement in governance and oversight, and conducting further research on promoting effective use of information by consumers.

RECOMMENDATIONS

A widespread and ongoing consumer education strategy should be developed to deliver accurate and reliable information about health care quality to consumers, and encourage them to consider information on quality when choosing health plans, providers, and treatments. Education should address: how health care experts define and identify good quality health care; how quality can vary across plans, facilities, health care organizations, and providers; why quality should be an important factor in making health care purchasing decisions; how to obtain comparative information on quality, their rights and responsibilities as health care purchasers and patients, and how they can play a role in improving health care quality.

Information on health care quality should be developed to meet the needs of consumers. Entities promulgating quality measures should obtain consumer input on issues consumers value and on the design of information reports that are intended, in part or in whole, for consumer use. Quality measures should be developed that are of interest to consumers in general, as well as consumers with particular health concerns (e.g., those with chronic or terminal illness, those receiving home care, those living with physical or mental disabilities, and those concerned with care of children).

Credible and stable programs are needed to produce and disseminate information for consumers. Current consumer information initiatives are carried out by numerous organizations including employee benefit managers, labor unions, health care organizations, and ombudsman programs. Such diversity is to be encouraged as are public and private sector partnerships in producing such information. Public and private group purchasers, health care organizations and governmental agencies are encouraged to provide stable and ongoing funding for such initiatives. Grant-making institutions (both foundations and governmental organizations providing research and demonstration funding) are encouraged to provide seed money for local consumer information initiatives.

Some consumers require assistance in making informed health care decisions about their health plans, professionals, and facilities. This assistance can come from a variety of sources including employee benefit managers, unions, public programs, health care organizations, and independent ombuds programs. Certain vulnerable individuals, e.g. those with low literacy, complex chronic conditions, or language or other cultural barriers, will require more intensive and specialized forms of assistance. Foundations, other research and grant making institutions, federal and state governments, group purchasers and other public and private coalitions, should fund consumer information and assistance demonstration programs with strong evaluation components.

Further research addressing use of information by consumers is needed. Public and private grant-making institutions and researchers should pursue a vigorous research agenda to enhance understanding of: how information on quality is and can be used by consumers in their purchasing decisions; how consumers value and use different types of quality information; differences in values among populations (e.g., with different educational, cultural, socio- economic and health status); and effective dissemination strategies for consumer information.

CONSUMERS' EXPERIENCE IN THE HEALTH CARE MARKET

While consumers(1) expend the largest share of spending in the health care marketplace (Table 1), their experience in shaping, and ability to shape, the type, quality, and costs of health care products is different from their experiences and abilities in other markets in which they purchase goods and services.

Market economies are based on the idea that what goods and services and how much of these will be produced is decided by consumers who "vote with their dollars" for the products of competing sellers (Friedman, 1935; Samuelson, 1992). A fully competitive market has been described (Massel, 1962; Donaldson, 1993) as one in which:

  • there are many buyers and sellers, each of whom acts in its own rational self interest, and no one of which can affect the market price.
  • buyers and sellers have complete knowledge about a uniform product and their transaction.
  • there are no costs associated with participating in the market.
  • the market price covers all the costs of producing the product and all those who benefit

from it pay the price;

  • new sellers can enter and compete in the market freely.
  • inefficient sellers will leave the market, unable to make a reasonable profit.

Table 1

Spending for Health Services and Supplies, by Sponsor: United States, 1965-94

Type of Sponsor

1965

1975

1985

1990

1991

1992

1993

1994

Amount in Billions

Total

$37.7

$122.00

$411.8

$672.9

$736.3

$806.0

$863.1

$919.2

Private

29.8

83.7

282.2

450.8

481.9

520.1

544.2

577.3

Business

5.9

27.5

108.6

185.8

198.2

215.9

226.8

241.3

Household (Individual)

23.2

53.8

160.5

245.3

262.2

281.9

292.9

310.1

Non-Patient Revenue

0.6

2.4

13.1

19.8

21.5

22.3

24.4

25 .9

Public

7.9

38.6

129.6

222.1

254.4

285.9

318.9

342.0

Federal Government

3.4

21.2

68.4

115.1

136.2

159.7

181.1

190.6

State and Local Government

4.5

17.4

61.2

107.0

118.2

126.2

137.8

151.3

Percent Distribution

Total

100

100

100

100

100

100

100

100

Private

79

68

69

67

65

65

63

63

Business Business

16

23

26

28

27

27

26

26

Household (Individual)

62

44

39

36

36

35

34

34

Non-Patient Revenue

2

2

3

3

3

3

3

3

Public

21

32

31

33

35

35

37

37

Federal Government

9

17

17

17

19

20

21

21

State and Local Government

12

14

15

16

16

16

16

16

Source: Health Care Financing Administration, Office of the Actuary: Data from the Office of National Health Statistics, 1965-94.

No actual markets meet all of these conditions, but some come closer than others. The health care market is different from many other markets in some important respects (e.g. the presence of group purchasers) (see Chapter 6), and the fact that most health care expenditures are paid for through insurance). And, although much progress has been made in recent years in making information on health care quality available to the public, the health care market still falls short of providing information to support consumers in carrying out their decision-making role.

Consumer Responsibilities

Consumers historically have not been expected to act as strong decision makers in their health care, whether the decisions be the selection of plans, products, or providers (as defined in Chapter 6) or participation in selecting among different treatments available to address their health needs. Some consumers also have been sheltered to some extent from the cost- implications of the decisions that they have made. While health care consumers without health insurance feel the full effect of the costs of health care, individuals with health insurance have many of their health care expenditures paid for through their insurance, which is predominantly paid for by group purchasers, (although economists note that consumers actually pay these costs through foregone wages). Further, only recently has science provided strong evidence of the link between personal behavior (e.g., diet and exercise) and health.

The Consumer Bill of Rights and Responsibilities identifies the need for consumers to adopt a more active role with respect to their health care. It defines their responsibilities for adopting healthy personal habits; becoming more involved in health care decision-making and treatment planning, understanding the limits of science, health care personnel and health care resources, and becoming more knowledgeable about health care delivery systems and their own roles in improving health care quality. All stakeholders in the health care industry that implement the Consumers Bill of Rights and Responsibilities will need to communicate with consumers about their responsibilities, as well as their rights, and encourage consumers to acknowledge accountability for their decisions and their actions (e.g., decisions about lifestyle, whether or not to participate in an offer of affordable insurance, or selection of competing health care providers, products and plans). In addition, a widespread and ongoing consumer education strategy should be developed, in part to educate consumers about their rights and responsibilities as health care consumers.

Consumer Information

An additional important difference in the health care market is the fact that consumers do not have anything close to "complete knowledge" about available plans, products and providers, especially when it comes to information on their comparable quality (Council of Economic Advisors, 1994; OTA, 1988). Understandable, reliable information about quality is key to consumers' ability to effectively participate in efforts to improve health care quality and fully exercise their responsibilities. Providing consumers with this information is increasingly important for other reasons. They face growing types and complexity of choices in the health care industry, including choices regarding plans, products (e.g., indemnity, HMO, PPO), providers and facilities. Greater access to information about quality also has the potential to raise consumer awareness of quality issues, broaden consumer concepts of quality and eventually change consumer expectations and influence how consumers use health care (Hibbard, 1997).

However, "the information [consumers] need is often unavailable, hard to find, difficult to understand, or lost in the noise of confusing messages" (Skolnick, 1997). Information that exists may be inaccurate, incomplete, or misleading (GAO, 1994). Finally, the cost to consumers of individually acquiring the knowledge necessary to wisely select providers and health plans has been so high as to deter all but the most aggressive and affluent consumers (Phelps, 1992). A recent national survey by the Henry J. Kaiser Family Foundation and the Agency for Health Care Policy and Research revealed that 39 percent Americans had ever seen comparative quality information about health plans, and of these, one-third actually used that information to make decisions (Robinson, 1997).

STRENGTHENING CONSUMERS

Consumers across all insurance and demographic groups have expressed an interest in obtaining useful information about quality, and considering this information when selecting health plans, products, providers, and facilities (OTA, 1988; IOM, 1996; Hiramatsu, 1994; Hanes 1997). Most consumers recognize that there are differences in quality among providers, and a sizable minority are motivated to seek and use information on quality to guide their choice of physicians and hospitals (OTA, 1988).

The findings of several focus groups confirm that consumers also want to factor in quality information in their decisions regarding plans. Respondents to the Kaiser/AHCPR survey indicated that they value quality in their health plan choices over other factors and the vast majority stated that they would consider it "very important" to know how well a plan takes care of its sick members or those with health problems (Robinson, 1997). One in three respondents to a 1995 survey conducted by Louis Harris and Associates indicated that they need a lot more information about the quality of physicians participating in health plan networks (Isaacs, 1996). Numerous other studies confirm consumers interest in comparative information about plan quality if it were made more easily available and understandable (Gross, 1989; McGee, 1996; GAO, 1994; Schauffler 1996; RTI, 1995).

However, consumers face a number of serious limitations to their ability to use information on quality in selecting their health care plans, products, and providers. Addressing these limitations will require three types of action: strengthening consumer readiness to use information on quality (including providing consumers with choices as addressed in Chapter 6); providing consumers with relevant, accessible and understandable information on quality, and providing help to those who require assistance in making informed health care decisions.

Strengthening Consumer Readiness

Although research has not yet indicated "how much" choice of providers, facilities and plans is optimal, consumers without some degree of choice may otherwise have little need for or interest in comparative information on quality. Chapter Six includes a discussion of the extent to which consumers have a choice of providers, products and health plans and encourages group purchasers to the extent feasible to offer consumers choice in the marketplace. Although most comparative information on quality that has been generated for use by consumers provides data about health plans, according to the Kaiser/AHCPR survey"almost half (45%) of respondents with employer-based coverage said they were offered only one health plan through their work"(Robinson, 1997). Conversely, much less comparative information is available to consumers on the quality of providers, where consumers have much greater choice.

Numerous studies, consumer focus groups, and surveys have documented the importance consumers place on understanding different benefits (Mechanic 1989, Research Triangle Institute 1995, National Committee for Quality Assurance 1995). In the Consumer Bill of Rights and Responsibilities, the Commission spoke to the importance of consumers being provided with detailed descriptive information on benefits, and the need to develop standardized definitions and reporting formats. Although the development of standardized reporting formats for benefits information will assist consumers in making comparisons, some public and private group purchasers also have taken steps to encourage greater consistency in benefits offerings across plans, in part, as a means of facilitating comparisons. Small employer purchasing groups such as the Connecticut Business and Industry Association and the Health Insurance Plan of California, as well as California, Wisconsin and the Federal Employees Health Benefit Program employ standardization of benefits among competing health plans offered to their public employees.

There also is a need to increase consumer recognition of the importance of purchasing based on quality. The Kaiser/AHCPR survey confirmed findings from earlier focus groups that Americans do believe that at least to some degree, quality varies among plans, providers and facilities (Robinson, 1997). However, there are indications that consumers either do not believe these differences are relevant to their purchasing decisions or that they are uncertain how to make purchasing decisions based on quality (Longo 1997). It has been suggested that, "[t]he more remote the level of analysis, the less likely consumers are to be interested..." That is, when measuring the experience of care, provider level information is more relevant to consumers than health plan information because they view providers as the ones responsible for the care itself (Pavey 1997; Cleary, 1997; McGee, 1996).

Researchers have identified numerous factors that increase the likelihood that consumers will want and use comparative quality information. For example: older white females rather than other elderly persons; consumers who lack a regular source of care and are in the early phases of a chronic illness (Davidson, 1988); consumers in need of treatment for serious conditions (OTA, 1988; Hibbard, 1997); female heads of households generally (Klinkman, 1994); and consumers considering making a change of health plan, or without a strong negative attitude toward survey data (McGee,1992), express greater interest in this information.

Assuring that Information is Relevant

In order for consumers who are "ready" to use information on quality to effectively do so, quality information must be relevant to their needs. Personal relevance or information about "people like me" is by far the most influential factor in determining usefulness of information (McGee, 1996; Sofaer, 1997; Hibbard, 1997; Pavey 1997; Hanes 1997). Research indicates that currently available quality information is more relevant to certain groups of consumers; for example, consumers with serious health problems, the "worried well," the affluent who need to make fewer quality/cost trade-offs, and the best educated of those with more time to devote to information gathering and decision making (Sofaer, 1997).

One reason why current information on quality may not be greatly relevant to more consumers is because much of this information was not designed for, and thereby may be less useful to, consumers. Experts note that the consumer perspective has been underemphasized by the "report card movement" (Harper 1997; Cleary 1997). A strong consumer voice also is needed in the governance structure of efforts to collect and disseminate information on quality (Hanes, 1997; Colmers, 1997; GAO, 1994). Most work with consumers to date has involved focus groups, which do not produce generalizable information. Other more statistically valid surveys have frequently addressed hypothetical situations. Further, most work with consumers has focused on quality of care for adults, with less information available on care of children. Greater ongoing involvement of consumer representatives in the design and implementation of consumer information initiatives could increase the relevance of information on quality to consumers.

Because of this, there have been multiple calls for the development of a framework for measuring quality that "makes sense" to consumers (OTA, 1988; Lansky, 1997). The Foundation for Accountability (FACCT) has developed such a "customer-centered" framework for quality measurement that is structured on five dimensions: "Basics" (getting treated with respect, communication, access); "Staying Healthy," "Getting Better," "Living with Illness," and "Changing Needs" (Lansky, 1997).

Some information is beginning to emerge about what information consumers find useful. An overwhelming majority (95%) of respondents to a Louis Harris survey ranked quality of doctors in a plan as the most important consideration in plan choice (Isaacs, 1996). Other researchers documents the importance of respect and being involved in treatment decisions (Cleary 1997), caring attitudes by hospital employees (National Research Corporation, 1987), highly qualified medical staff, advanced technology, a wide range of services, and hospital reputation (Jensen, 1992).

Assure Useful Information is Accessible

Comprehensive Quality Information in the Public Domain. Once information most useful to consumers is identified, it must be produced for each level of choice available to consumers: health plans, health care facilities and organizations and individual physicians. At present, such comprehensive measures of quality are not readily available for two reasons.

First, some desired information simply does not yet exist. As discussed at greater length in Chapter Four, this is because:

  • Standardized quality measures have not yet been developed for all components of the health care industry. Specifically, measures at the provider level are lacking.
  • Limitations of existing clinical information systems of individual providers, facilities and health plans (e.g., information coding schemes, data entry failures and errors) also

prevent data collection;

· There is a lack of measures relevant to certain types of consumers, especially vulnerable populations (e.g., those with complex or chronic diseases or disabilities, receiving care in the home, or mentally ill);

· Techniques for risk adjustment of performance measurement are not consistently available or utilized when available; and

· There is a lack of uniform reporting by health care organizations.

Where comparable quality data are available, the information often may not be in the public domain at the local level. Most quality information produced by health plans and facilities for external use is provided to the group purchaser or quality oversight organization that requires its submission. Although there are numerous organizations that attempt to make comparative information available to the public, the unavailability of information in the public domain has stymied attempts at the local level to present such information to consumers (Cronin, 1997; Krughoff, 1997).

Dissemination of Understandable Information

Where data on health care quality information exists, processes are needed to translate this data into information understandable to consumers. Such undertakings involve several steps, which together make the process of effectively producing reliable information, understandable to consumers, a resource-intensive process.

· Translate quality data into information. Analysis of data is needed to: detect statistical significance and trends or patterns in performance, perform risk-adjustment, when necessary, and to aggregate groups of performance measures into summary measures or proxy indicators to be more helpful to consumers (Hibbard 1997).

· Present information in easily understood formats. People vary considerably in their understanding of information and information needs. Even for individuals whose information-processing abilities are high, an easily-understood format is needed because quality information, like all new information, is especially difficult to process (OTA, 1988; Cleary 1997). Tailoring of information to various educational levels, other languages (IOM, 1996), the disabled, poor, or individuals of cultural minorities is also important as is the need to understand the particular context in which the services they seek will be provided, e.g. special program rules. Measures of quality of care should also be accompanied by background explanations of how these measures reflect plan performance and access to care (RTI, 1995; McGee, 1996). Information for consumers must be comprehensive enough to accommodate the different priorities of consumers, but organized in a way that is easy to sort through. For example, information that is presented in "layers" allows consumers to choose the level of detail they need to make their choice decisions (RTI, 1995; McGee 1994, Pavey 1997). It is not expected that any single entity promulgating consumer information must do so in all different types of media and in different formats. The many different entities now presenting information to consumers collectively provide consumer information in a variety of formats.

· Present information about risk, statistics and other complex concepts. Evidence shows that consumers generally have a tendency to perceive risk inaccurately (Bettman, 1986; Hibbard, 1997). Some people also have a particular problem processing mathematical concepts (OTA, 1988).

· Provide timely information. Information must be available at different times, including when consumers are faced with decisions, such as choosing a plan, reaching Medicare eligibility age, or securing needed medical care (Andersen 1997; Pavey, 1997). In addition, messages need to be repeated over a long period of time because people have limited ability to retain information, and retention of quality of care information specifically appears to be slight (OTA, 1988).

· Disseminate information through multiple methods. Experts note that it is best to use a variety of methods to disseminate information on quality of care, including print, television, radio, videotaped presentations, online services (IOM, 1996) (RTI, 1995) and face to face presentations and dialogue. In addition, special methods may be needed to provide information to consumers who have sensory impairments, such as large print text, Braille, audiotape, and other forms of effective communication with this population. The local television, radio, and print media can play a valuable role in both the dissemination and interpretation of quality information for consumers (Harper, 1997). This is evidenced by the significant amount of national and local press coverage of several report card efforts (Consumer Reports, 1996; US News and World Report, 1996; Newsweek, 1996; The New York Times, 1995; and The Boston Globe, 1996).

· Assure the credibility of the information. Experts point out that consumers are savvy about the potential for manipulating statistics and other health care information by plans, providers and employers (Pavey, 1997). The consumer's belief in a source of information increases his or her acceptance of the information and simplifies the decision making process (OTA, 1988) and can increase the sense that delivery systems and health plans are accountable to consumers (Sofaer, 1997).

As the above dissemination issues suggest, there is broad consensus among organizations with extensive experience in producing and disseminating comparative information on quality for use by consumers that these activities are not inexpensive and that without stable and adequate funding, these kinds of projects will have a difficult time continuing (Cronin 1997, Krughoff 1997, Colmers 1997, and Harper 1997). This is primarily because of the labor intensive processes required to translate individual measures produced by health care suppliers (e.g. hospitals, health plans) into useable information for consumers. Funding for existing consumer information efforts can come from a variety of sources, including: state premium taxes (Maryland Health Care Access and Cost Commission, Colmers 1997); contributions from area businesses (Cleveland Health Quality Choice, Harper 1997; Health Pages, Cronin 1997); contributions from provider organizations and private foundations (Harper 1997); and sale of publications and other services (Consumer Checkbook, Krughoff 1997).

Several major stakeholders are now undertaking consumer information initiatives. The American Hospital Association and the American Medical Association have a joint initiative to produce a standardized "health plan label" to facilitate consumer understanding of the their health plan choices (Davidson and Lewers, 1997). The American Association of Health Plans has developed "A Common-Sense Guide to Choosing a Health Plan." The U.S. Health Care Financing Administration is undertaking the National Medicare Education Program employing multidimensional strategies for educating beneficiaries about making informed health care decisions

Assist Consumers to Interpret Information

Even the most appropriate and abundant information on quality may not sufficiently inform consumers on quality of care if they are unable to interpret or understand the content of the information. Most consumers have no natural framework for understanding what this

information means or how to use it (OTA, 1988). And, as the number of performance indicators grows, so does concern about whether consumers can effectively process this amount of information, particularly in view of the fact that other information must also be factored into consumers' choices; for example, cost, benefits, plan type and option levels. Evidence produced by substantial research in the behavioral and social sciences consistently documents that there are limits on people's ability to process information, even for individuals whose information- processing abilities are high (OTA, 1988). New information, such as quality-of-care information, is especially hard to process. Even when consumers have access to an interactive source such as a computer kiosk, some may need to consult a live person (Hanes, 1997).

Some individuals, especially vulnerable individuals (e.g., the frail elderly, and individuals with disabilities, sensory impairment, chronic illnesses and limited education) may need assistance in interpreting information. More than 40 percent of respondents to the Louis Harris and Associates survey indicated that it would be very useful to have more opportunities for individual assistance in order to ask questions about health plan selection (Isaacs, 1996). A number of entities currently serve this function or are well poised to take on this function, including:

·In-house membership services within health plans and employer human

resources departments;

  • Federal and State agencies, such as the U.S. Department of Labor, State insurance commissioners, State attorneys general, and State Medicaid agencies.
  • Labor unions in a number of cases interpret benefits, perform an ambitious role and address administrative issues.

· Independent Ombuds programs currently in place in various parts of the country, including Medicaid ombuds programs in 14 States (Lee, 1996; Horvath, 1995);

  • Information, Counseling and Assistance (ICA) programs funded by HCFA since 1992 operate in all 50 states to assist Medicare beneficiaries with questions about enrollment, Medigap and dual eligibility with Medicaid (McCormack, 1996); and
  • Long term care ombuds programs in every State disseminate information on long term care facilities.

More research is needed to understand under what circumstances and how such assistance is most effectively delivered. However, prior to and concurrent with such research, greater efforts should be made to coordinate communication with consumers about where they can go to receive such assistance as well as to coordinate the provision of these services by multiple entities.

NEED FOR RESEARCH AND DEMONSTRATIONS

We know "surprisingly little" about providing quality information to consumers and how quality information does or could influence decision making (Cleary, 1997; Sofaer, 1997). More generally, we still do not fully understand how consumers make their health care decisions. Consumer "report cards" have a short history and there is little empirical evidence about how they are used by consumers and providers (Longo, 1997). Most of the current strategies in place for dissemination of quality information to consumers are not well informed by research (Hibbard, 1997). Too little also is known about how to make information relevant to consumers (Cronin 1997).

Because of this, more research is needed on:

  • What consumers would like in "report cards" and similar products.
  • How they interpret information that is presented, and how such information can or could influence decisions that they make - in particular, the decision-making behavior of consumers with less education and those in minority communities.
  • Which consumers may need assistance from trained individuals in interpreting and using quality information, and how best to provide this assistance.
  • How to create and present data, especially to people with sensory deficits.
  • What are the differences in values among subsets of the populations with different education, racial, and ethnic backgrounds, and different financial resources and health status (Cleary, 1997).

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Robinson, Sandra Mollyann Brodie, "Understanding the Quality Challenge for Consumers: The Kaiser/AHCPR Survey," The Joint Commission Journal on Quality Improvement, 1997; 23(5):239-244.

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Schauffler, Helen Halpin Tracy Rodriguez, "Exercising Purchasing Power for Preventive Care," Health Affairs, 1996; 15(1): 73-85.

Skolnick, Andrew A., "A FACCT - Filled Agenda for Public Information," JAMA.1997; 19:1558.

Sofaer, Shoshanna "How Will We Know if We Got It Right? Aims, Benefits, and Risks of Consumer Information Initiatives," The Joint Commission Journal on Quality Improvement, 1997; 23(5):258-264.

The Boston Globe. "New England HMOs score top grades on national ?report cards.' Thursday, August 22, 1996.

The Wall Street Journal, "Taking the Pulse of H.M.O. Care" February 24, 1995.

U.S. News and World Report, "Rating the HMOs" September 1996.

(1)In this document, "consumers" refers to all potential individual end-users of health care, i.e., men, women and children who receive the health services delivered by physicians, nurses dentists, and other licensed and unlicensed health care providers.


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