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 ombuds 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, socioeconomic and health status); and effective dissemination strategies for consumer information.
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 and Nordhaus, 1994). A fully competitive market has been described (Massel, 1962; Donaldson and Gerard, 1993) as one in which:
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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 many 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 decisionmaking role.
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 decisionmaking 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 Consumer 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. In turn, consumers should seek opportunities for greater involvement in the governance and oversight of entities working to improve health care quality.
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 of Americans had ever seen comparative quality information about health plans, and of these, one-third actually used that information to make decisions (Robinson, 1997).
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 and Schaffer, 1989; McGee, Sofaer, and Kreling, 1996; GAO, 1994; Schauffler, Halpin, and Rodriguez, 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.
Numerous studies, consumer focus groups, and surveys have documented the importance consumers place on understanding different benefits (Mechanic, 1989; RTI, 1995; NCQA, 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 et al., 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 and Edgman-Levitan, 1997; McGee, Sofaer, and Kreling, 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); and consumers considering making a change of health plan, or without a strong negative attitude toward survey data (McGee and Hunter, 1992), express greater interest in this information.
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 and Edgman-Levitan, 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 percent) 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 and Edgman-Levitan, 1997), caring attitudes by hospital employees, highly qualified medical staff, advanced technology, a wide range of services, and hospital reputation (Jensen, Marino, and Clough, 1992).
First, some desired information simply does not yet exist. As discussed at greater length in Chapter 4, this is because:
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).
Such undertakings involve several steps, which together make the process of effectively producing reliable information, understandable to consumers, a resource-intensive process.
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; 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 usable information for consumers. Funding for existing consumer information efforts can come from a variety of sources, including State premium taxes (Colmers, 1997); contributions from area businesses (Harper, 1997; Cronin, 1997); contributions from provider organizations and private foundations (Harper, 1997); and sale of publications and other services (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 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.
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:
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.
Because of this, more research is needed on:
Bettman, James R., John W. Payne, and Richard Staelin, "Cognitive Considerations in Designing Effective Labels for Presenting Risk Information," Journal of Public Policy & Marketing (5):1-28, 1986.
Boston Globe. "New England HMOs Score Top Grades on National 'Report Cards,'" August 22, 1996.
Cleary, Paul D., and Susan Edgman-Levitan, "Health Care Quality: Incorporating Consumer Perspectives," Journal of the American Medical Association 278(19):1608-1621, November 19, 1997.
Colmers, John M., testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Consumer Reports, "How Good Is Your Health Plan," pp. 27-42, August 1996.
Council of Economic Advisors, Economic Report of the President Transmitted to the Congress January 1994.
Cronin, Carol, testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Davidson, B.N., "Designing Health Insurance Information of the Medicare Beneficiary: A Policy Synthesis," Health Services Research 23(5):685-720, December 1988.
Davidson, Richard J., and Ted Lewers, MD, testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, December 16, 1997.
Donaldson, Cam, and Karen Gerard, Economics of Health Care Financing: The Visible Hand (New York: St. Martins Press, 1993).
Friedman, Milton, The Methodology of Positive Economics, Essays in Positive Economics (Chicago: University of Chicago Press, 1935).
General Accounting Office, Health Care Reform: "Report Cards" Are Useful but Significant Issues Need to Be Addressed, GAO/HEHS-94-219 (Washington, DC: September 1994).
Gross, P.A., and W.A. Schaffer, "Consumer Awareness of Hospital Mortality Data," Journal of Health Care Marketing 9(4):52-55, December 1989.
Hanes, Pamela P., testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Harper, Dwain L., testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Hibbard, Judith H., testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Institute of Medicine, Improving the Managed Care Market: Adding Choice and Protections (Washington, DC: National Academy Press, 1996).
Isaacs, Stephen L., "Consumers' Information Needs: Results of a National Survey," Health Affairs 15(4):31-41, Winter 1996.
Jensen, C.K., P.B. Marino, and J.D. Clough, "A Consumer Guide for Marketing Medical Services: One Institution's Experience," Quality Review Bulletin 18(5):164-171, May 1992.
Krughoff, Robert, testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Lansky, David, testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, September 9, 1997.
Lee, Peter V. and Carol Scott, Managed Care Ombudsman Programs: New Approaches to Assist Consumers and Improve the Health Care System (Los Angeles: Center for Health Care Rights, December 1996).
Longo, Daniel R., Garland Land, Wayne Schramm, et al., "Consumer Reports in Health Care: Do They Make a Difference in Patient Care?" Journal of the American Medical Association 278(19):1579-1584, November 19, 1997.
Massel, Mark S. "Indicators of Competition," in Competition and Monopoly: Legal and Economic Issues (Washington, DC: Brookings Institute, 1962).
McCormack, Lauren A., Jenny A. Schnaier, James Lee, and Steven A. Garfinkel, "Medicare Beneficiary Counseling Programs: What Are They and Do They Work?" Health Care Financing Review 18(1):127-140, Fall 1996.
McGee, Jeanne, and M. Hunter, Employee Response to Health Benefits Survey Result Brocher: Findings From Fall 1992 Interviews, Final Report to State of Minnesota Department of Employee Relations (December 28, 1992).
McGee, Jeanner, Shoshanna Sofaer, and Barbara Kreling, Findings From Focus Groups Conducted for the National Committee for Quality Assurance (NCQA) Medicare and Medicaid Consumer Information Projects (Washington, DC: National Committee for Quality Assurance, July 1996).
Mechanic, David, "Consumer Choice Among Health Insurance Options," Health Affairs 18(1):138-148, Spring 1989.
National Committee for Quality Assurance, NCQA Consumer Information Project Focus Group Report (Washington, DC: Spring 1995).
Newsweek, "America's Best HMOs -- Rating the Top Managed Care Companies" June 24, 1996.
Office of Technology Assessment, The Quality of Medical Care: Information for Consumers, OTA-H-386 (Washington, DC: U.S. Government Printing Office, 1988).
Pavey, Thomas, testimony before the Advisory Commission on Consumer Protection and Quality in the Health Care Industry, November 18, 1997.
Phelps, Charles E., Health Economics (Reading, MA: Addison Wesley Longman, Inc., 1992).
Research Triangle Institute, Information Needs for Consumer Choice, Final Focus Group Report, prepared for Office of Research and Demonstrations, Health Care Financing Administration (Research Triangle Park, NC: RTI, 1995).
Robinson, Sandra, Mollyann Brodie, "Understanding the Quality Challenge for Consumers: The Kaiser/AHCPR Survey," Journal on Quality Improvement 23(5):239-244, May 1997.
Samuelson, Paul A., and William D. Nordhaus, Economìa, 14th edition (Aravaca (Madrid): McGraw-Hill, 1994).
Schauffler, Helen Halpin, and Tracy Rodriguez, "Exercising Purchasing Power for Preventive Care," Health Affairs 15(1):73-85, Spring 1996.
Skolnick, Andrew A., "A FACCT-Filled Agenda for Public Information," Journal of the American Medical Association 278(19):1558, November 19, 1997.
Sofaer, Shoshanna, "How Will We Know if We Got It Right? Aims, Benefits, and Risks of Consumer Information Initiatives," Journal on Quality Improvement 23(5):258-264, May 1997.
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.