National Academies Press: OpenBook

Improving the Medicare Market: Adding Choice and Protections (1996)

Chapter: I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?

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Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
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I

What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?

Susan Edgman-Levitan and Paul D. Cleary*

Introduction

More than 25 years ago, Donabedian (1966) stimulated a still-burgeoning effort in theoretical and empirical work on quality assessment. Those who provide and finance health care, as well as the American public, are paying increasing attention to the quality of medical care (Berwick, 1989a,b; Bowen and Burke, 1988; Brook and Lohr, 1985, 1987; Caper, 1988; Cleary et al., 1991; Dubois et al., 1986; Hughes et al., 1987; Larson et al., 1988; Lohr et al., 1988; Meterko et al., 1990; Orient et al., 1983; Roper et al., 1988; Steffen, 1988). Numerous quality assurance and utilization review mechanisms have been developed to monitor and control the process of care in hospitals. In addition, a variety of new methods for monitoring and evaluating the outcomes of hospital care are being developed (Allen et al., 1994; American College of Physicians, 1988; Cleary et al., 1991b, 1992a; Ellwood, 1988; Lohr, 1989; McDowell and Newell, 1987; Patrick and Bergner, 1990; Patrick and Erickson, 1988, 1993; Schroeder, 1987; Thier, 1992; Wilson and Cleary, 1995). Many

*  

The Picker Institute and Harvard Medical School, Department of Health Care Policy, Boston, Massachusetts.

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

of these efforts, however, have two limitations: they rely only on medical or administrative records as sources of information, and they define ''quality" in terms of a relatively narrow range of technical processes and physiological outcomes (Caper, 1988; Cleary and McNeil, 1988; Cleary et al., 1991a, b; Davies and Ware, 1988; Donabedian, 1988; Garvin, 1984; Lohr et al., 1988; Matthews and Feinstein, 1988; Meterko et al., 1990; Steffen, 1988). Interestingly, little of the systematic work to date on quality assessment and quality assurance has taken advantage of the information and perspective that only patients can provide.

Patient reports can be extremely useful in evaluating the quality of medical care. Many critical aspects of medical care, such as difficulty obtaining care, waiting time in an office, adequacy of communication, education, pain control, and emotional support, and whether patients were appropriately involved in important decisions about their care, are not recorded routinely by hospitals, health plans, or individual clinicians.

Furthermore, providers frequently have priorities different from those of patients and perceive events differently than patients do. In a Picker/Commonwealth Program for Patient-Centered Care-American College of Physicians study of 74 physicians and 814 patients, both groups agreed that clinical skill is most important, but patients ranked information and effective communication second in importance, whereas physicians ranked it sixth out of seven. The two groups differed substantially on 59 percent of the attributes in an item-by-item comparison of the ratings. Equally important, patients can provide information about important processes of care that is not available from other sources, for example, the length of waiting time in the doctor's office or the adequacy of pain control.

How Do Consumers Define High-Quality Medical Care?

It often is assumed that consumers are particularly interested in knowing about other consumers' evaluations of health care providers or systems. Surprisingly little information is available on this topic.

Different types of consumers, for example, healthy persons

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

or those with chronic diseases have different informational needs. Not everyone has the interest or ability to evaluate detailed information, an issue of particular importance with an elderly population. Furthermore, to our knowledge, no one has distinguished the information needs of the general consumer from those of the health care decision maker in a family, that is, the person responsible for choosing the health benefits.

Information included in consumer reports can be selected on the basis of two related but independent criteria. First, users must be given the information they say they want and need. Second, reports also should include the information that best reflects the technical quality of care that health plans deliver.

Over the past several years, researchers have conducted hundreds of focus groups with different types of consumers to understand how patients define quality of care and which aspects of care should be measured, from the patient's perspective. Below, we summarize the results of some of those studies.

Patient satisfaction with medical care is perhaps one of the most commonly measured patient attitudes, and work in this field has increased markedly in the past decade or so (Allen et al., 1994; Cleary and McNeil, 1988; Cleary et al., 1991a, 1992a, 1993; Davies and Ware, 1988; Hall and Dornan, 1990; Hall et al., 1993; Hays et al., 1993; Rubin et al., 1993; Safran et al., 1994; Ware and Hays, 1988).

There is an extensive literature on both the determinants and the consequences of patient satisfaction (Cleary and McNeil, 1988; Davies and Ware, 1988). Almost all of the instruments used to assess patients' satisfaction with their care assess important aspects of care. However, many of the instruments used in earlier research studies were not based on careful assessments of how patients define and perceive quality and did not explicitly incorporate patient priorities during the development of measures. For example, many patient satisfaction scales place substantial emphasis on amenities (attractiveness of waiting rooms, parking, hospital food, etc.), whereas when consumers are asked to define the most important aspect of quality care, they do not place a high priority on those features of care.

An early activity of the Picker Institute was an evaluation of the existing measures and the development of a new instrument to assess the quality of hospital care, from the patient's perspec-

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

tive. The development process included a thorough review of the literature but placed a great deal of emphasis on eliciting directly from patients the ways in which they defined and evaluated care. For example, we conducted numerous focus groups with patients, their families, other laypersons, and health professionals.

We also conducted pilot interviews with patients and their families from different parts of the country. Subsequently, we had patients and health professionals critique the types of questions that we asked about the quality of health care and tell us about the priority that they gave to the different aspects of care that we asked about (Cleary et al., 1991a, 1992).

We conducted focus groups to find out more about the patients' experiences of illness and health care and the systems that do and do not work to meet patients' needs. What is it about their interactions with providers, systems, and institutions that patients say matters to them and affects them either positively and negatively (Gerteis et al., 1993). On the basis of that work, we defined several dimensions of care that we think describe how consumers define quality and reflect the most salient processes of care for which they might want comparative assessments. For hospital inpatients, the dimensions are as follows:

  • respect for patients' values, preferences, and expressed needs;
  • coordination of care;
  • information, communication, and education;
  • physical comfort and pain management;
  • emotional support and alleviation of fear and anxiety;
  • involvement of family and friends; and
  • transition and continuity to the home or community.

The Picker Institute and its collaborators have conducted similar studies of ambulatory care. Focus groups have been used to identify the needs of ambulatory patients receiving care in emergency rooms, private doctor's offices, hospital outpatient clinics, community health centers, and managed care plans.

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

Ambulatory care patients are concerned about a somewhat different set of dimensions:

  • access to care;
  • coordination of care;
  • information, communication, and education;
  • respect for patients' values, preferences, and expressed needs;
  • emotional support and the alleviation of fear and anxiety; and
  • patients' experiences with specific processes of care: waiting times in the office, assistance from office staff, tests and procedures, and follow-up care and information.

Multiple focus groups conducted with Department of Veterans Affairs' (VA) patients from different geographic regions confirmed the dimensions of quality identified by earlier Picker Institute work as being most important to patients. The VA National Customer Feedback Center and Department of Quality have established them as the "customer standards" for all VA hospitals.

What Types of Information About Quality Do Consumers Want?

Learning about how consumers define quality medical care does not necessarily answer the question of what types of information consumers want to evaluate health care plans when making selections among plans. Health plans are increasingly making information about patients' evaluations of their care publicly available. Reports describing such information often are referred to as "report cards." Although we now know a great deal about how consumers define quality medical care, we know much less about what information consumers would like to see in such reports and how they interpret and evaluate such information.

The National Committee for Quality Assurance (NCQA) conducted research, in collaboration with the Picker/Commonwealth Program for Patient-Centered Care and the Agency for Health Care Policy and Research (AHCPR), to learn more about

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

consumers' attitudes toward report cards. The work included a review of the literature and focus groups with a broad range of consumers.

This work and our review of summaries of focus groups conducted by other groups lead to several general conclusions:

  • Consumers would use information on how a plan works, what it costs, the covered benefits, the quality of care, and overall satisfaction with care if it were available.
  • Consumers are most concerned about costs of coverage, technical competence, the information and communication provided by physicians, coordination of care, and access.
  • Consumers are savvy and are able to evaluate critically information about quality. In fact, they raise many of the same issues debated by experts in quality measurement. Every single focus group expressed concern, for example, about the source and quality of the data, the size of the population (denominator), the size of the survey sample, and the validity of the data.
  • Consumers want to know how others "like them" evaluate care, and many trust patient evaluations more than any other source of data. Opinions about the appropriate balance between summary and detailed information varied.
  • Consumers want an unbiased, expert source of judgment about health care quality. Many are skeptical about data collection or assessments performed by health plans, insurance companies, employers, and/or the government.

What Kind of Information is of Particular Interest to Medicare Beneficiaries?

We have only limited data about how Medicare beneficiaries make decisions to join managed care plans and their needs for information to support those decisions. However, several organizations have conducted focus groups with Medicare beneficiaries about related issues that provide us with some insights, and inferences can be made about the kind of information that Medicare beneficiaries would want about managed care. We also conducted interviews with Medicare program managers in large managed care organizations, state insurance hot lines, and con-

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

sumer advocacy groups for the elderly. We describe below the common themes that emerged from those efforts.

Focus Group Findings

Several organizations have commissioned focus group studies to examine attitudes and concerns of the elderly toward Medicare managed care selections. Those studies are useful in that the same themes emerge consistently. However, the findings are not necessarily representative for all Medicare beneficiaries, and those most in need of high-quality, comprehensive care—the disabled, the chronically ill, and those who are cognitively impaired—may be the least likely to participate in focus groups.

In a 1995 study conducted by Frederick/Schneiders, Inc., for the Henry J. Kaiser Family Foundation (Frederick/Schneiders, Inc., 1995), senior citizens expressed significant mistrust and anger about managed care and believed that elders are being forced to accept a lower standard of care to increase health care profits and reduce the government's budgetary problems. The study found that few consumers, especially the elderly, understand how managed care works except in areas with high levels of penetration into the managed care market.

Focus group participants in that study, however, were interested in comparative data on benefits and quality of care and descriptive information about how managed care plans function. They wanted information about how to choose a provider and wanted to see specific information about primary and specialty providers, including information on training, a physician's gender, location, and patient satisfaction information. They were also concerned about how much choice they have with respect to hospitals.

Much of the information that they requested is descriptive: How does managed care work? What are their rights? How do you pick a doctor? How do you switch physicians? What happens if you need experimental treatments? Where are centers or clinics located, and what are their hours?

As for data, these focus group participants also were interested in satisfaction information, but they expressed concerns about the utility of general satisfaction information. Most par-

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

ticipants talk about the need to understand the source of information: the value system, beliefs, and intelligence of the person or people from whom it was acquired. Word-of-mouth information, on the other hand, was seen as extremely valuable. Participants were much more interested in the opinions of their family members, friends, or neighbors than in those of their coworkers or other employees from their former places of employment.

In 1994, NCQA conducted focus groups as part of the Consumer Information Project that included Medicare recipients. Two of the groups who were composed of consumers who had chronic conditions or were retirees. The findings of that study—both for all consumers and for these two groups—were similar to the focus group findings described above. Participants were very interested in comparative information on costs, the benefits package, and how the plan worked. They also expressed dismay that no comparable information exists for fee-for-service coverage. They wanted assurances that the technical quality of care had been assessed and wanted information about other aspects of quality. They were primarily concerned with the quality of the physicians, their technical skill, their ability to communicate, and their accessibility, especially in the event of an emergency. Many found the typical information about how to pick a doctor confusing. Several participants said, "Just tell me if I can pick my doctor or not!"

Many elderly and chronically ill focus group participants made negative comments about the information provided to them about access. They did not want ratings, because they could not interpret another person's tolerance for waiting times for appointments or in the waiting room. They wanted to know the number of days or the time spent waiting in the office so that they could judge for themselves. Interestingly, they also wanted to know about access to information over the phone so that they could avoid an appointment, if possible.

Again, these consumers—some of whom were low-income patients with little education—were very able to critically evaluate the information provided to them. They wanted to know the source of the information, the size of the population measured, the sample size, and how the results compared with national

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

norms. They also remarked that some Health Plan Employer Data and Information Set (HEDIS) measures (such as the percentage of women over age 50 who have had mammograms or the percentage of children who had been immunized) reflected personal behavior and social problems as much as the quality of a health plan.

Chronically ill and retired focus group participants had more concerns about the comprehensiveness of the coverage and the referral process for specialty care. They were also interested in the communications skills of their providers and in good access. They showed mixed loyalty to their physicians; for some, comprehensive coverage was more important than the ability to remain with their primary care provider.

These participants also expressed more interest in the ratings of satisfaction from family members and friends than from consumers in general. They also wanted detailed ratings of overall satisfaction rather than aggregate groupings of the "satisfied" versus the "dissatisfied."

The elderly were not interested in evaluations of services that they would not use, for example, pediatric immunizations. They wanted information that assessed and compared care that both genders were likely to receive and that was relevant to their age and health status.

The Research Triangle Institute is now conducting a study to develop and test prototype information materials for Medicare and Medicaid beneficiaries (Research Triangle Institute, 1995a,b). The findings from the focus group and case study components of that study are similar to the findings from other focus group studies and to those from interviews that we conducted with state health insurance counseling programs and advocacy groups. Consumers expressed interest in the following:

  • structural measures, that is, the scope of benefits, premiums, and how the plan works;
  • survey-based measures: access to care, communication/interpersonal skills, experiences with the physician/hospital/ member services; and
  • assurances that data have been collected and analyzed by an independent third party.
Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

The report also suggests that Medicare beneficiaries would like more guidance to direct them toward a particular choice. It suggests that the development of composite measures or scores that synthesize concepts such as access, communication, and coordination of care might be helpful. Once again, participants found the information received from family members and friends to be more helpful and trustworthy than information received from other sources and also wanted to see more detailed information about the experiences of plan members "like them."

Literature on Health Care Consumer Decision Making

Berki and Ashcraft (1980) postulate that choice of plan will be a result of consumer characteristics, insurance characteristics (e.g., costs and benefits), and delivery system characteristics (e.g., access and quality). Acito (1978) emphasizes the role of information and satisfaction with care in the decision making process, both the decision to enroll and the decision to remain in a given plan. There are surprisingly few empirical studies on how consumers, in general, or Medicare beneficiaries, in particular, make choices among health care providers.

Some studies suggest that a strong, satisfactory relationship with a health care provider will influence the decision to choose or remain in a plan (Lohr et al., 1991; Raymond, 1995). A 1993 study by Sofaer and Hurwicz tested a model of decision making that included the consumers' level of knowledge of available options and the most influential sources of information. The study found that 60 percent of Medicare beneficiaries switched managed care plans to preserve their preexisting relationship with doctors.

Beginning in 1993, the Office of the Inspector General of the U.S. Department of Health and Human Services began surveying Medicare beneficiaries enrolled in or recently disenrolled from health maintenance organizations (HMOs) to better understand enrollment procedures and service quality issues from the perspective of the beneficiaries. The intent of the study was to identify, from the beneficiaries' perspective, areas that need improvement and to suggest methods that the Health Care Financing Administration (HCFA) could use to monitor these ar-

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

eas in the future (Office of the Inspector General, 1995). Although that study was not intended to identify information that beneficiaries might use to select a plan, certain areas of performance or perceptions of service were strongly correlated with disenrollment. One could argue that comparative information about these areas might be helpful to beneficiaries in their initial selection of plans. The questions most predictive of beneficiaries' future disenrollment included the following:

  • Were complaints taken seriously by the doctor? (Respect)
  • Did their primary HMO doctors provide Medicare services, admit them to the hospital, or refer them to specialists when needed? (Access)
  • Did they perceive that their HMOs are giving too high a priority to holding down the cost of medical care than to giving the best medical care?
  • Did they perceive their health worsening as a result of the medical care that they received in their HMO?
  • Did they experience long waits in their primary care doctors' offices? (Access)
Interviews with Decision Makers

To augment the literature about the informational needs of Medicare beneficiaries, we interviewed staff at state insurance counseling programs, consumer advocacy groups, HMO managers of Medicare programs, patient relations managers for large individual practice associations (IPAs), and prepaid group practice plans to learn more about the type of information most often requested and to find out what kind of information seemed most helpful to potential Medicare enrollees and/or their family members inquiring on their behalf. We also interviewed a benefits manager from a large national employer about how information is disseminated to retirees (personal interviews with: HealthPartners, Minneapolis, Minn.; Harvard Pilgrim Health Plan, Boston, Mass.; Fallon Health Plan, Worcester, Mass.; The Family Health Plan, Tampa, Fla.; state insurance information hotlines in Arizona, California, Florida, Massachusetts, Missouri, Texas; GTE, Waltham, Mass.; HCFA, Baltimore, Md.).

Those interviews suggest that Medicare beneficiaries have

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

many of the same concerns as most new enrollees in managed care plans. They often do not understand what managed care is and express concern that it represents ''second-class care." Cost is a major concern, as is overall quality of care.

The managers of Medicare HMO programs confirmed focus group findings about beneficiaries' need for information. They report that the most frequent benefit questions focus on prescription benefits, home care and long-term-care coverage, dental and foot care services, and out-of-plan coverage, especially in plans in the Northeast or Midwest with large "snowbird" populations.

Many state insurance commissions have established free, long-distance hot lines, one-on-one counseling sessions, newsletters, and other types of educational presentations to provide Medicare beneficiaries with information. Our efforts to contact these services revealed several things:

  • Many were extremely difficult to find; it required an assertive, determined person to locate many of the counseling or information services.
  • Several insurance commission phone numbers required working through a maze of voice mail, only to end up with a recorded message asking the caller to leave a name and phone number.
  • Many staff who we spoke with expressed concern about making subjective recommendations, or even providing helpful information about what to look for in a managed care option, for fear of "influencing" beneficiaries or of "being censored by health plans."

Interactive methods of presenting information are beginning to provide data about how consumers use "layered" information previously unavailable. Layered information allows the user to look at global information about a plan and then request more specific information about a plan, a center or provider, or specific patient populations, defined by demographic variables or diagnostic groups. Anecdotal information from our interview about the kiosk system reveals that the elderly are using the patient satisfaction information much more than expected now

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

that it is available. The first formal transaction data report about the use of the kiosks designed by HealthPartners in Minneapolis may be available during 1996.

All of the individuals from managed care plans interviewed indicate that their plans use a combination of written materials, educational group presentations, face-to-face meetings, and benefits hot lines to inform and educate Medicare beneficiaries about their plans. Some plans sponsor fairs and have support groups for caregivers, as another way of providing information and assistance to the elderly population. Those whom we interviewed commented on the importance of face-to-face meetings to this population.

Although consumer advocates express concern about unfair marketing practices that might occur in individual meetings with Medicare beneficiaries, consumers seem to prefer to look someone in the eye and decide whether they are trustworthy and honest.

Recommendations

Our research and review of the literature confirm that a great deal more needs to be known about the information needs of all consumers, especially Medicare beneficiaries. Consumers are much more sophisticated about data and information than researchers or health care providers often give them credit for. However, we have only a limited understanding about the kinds of information consumers may ultimately find most helpful.

Many studies (Davidson, 1988; Hibbard and Weeks, 1987; Sofaer, 1993a) have shown that Medicare beneficiaries need to understand how Medicare works and need to have a basic understanding of managed care and their rights in managed care plans before they can make informed choices about which plan to choose. They need standardized benefit packages comparing managed care and fee-for-service options that can be easily described and explained and standardized, clear information about supplemental coverage. For example, Sofaer (1993b) estimates that 10 to 15 percent of Medicare beneficiaries have duplicative policies that entail significant out-of-pocket expenses to a population with limited means.

Consumers need comparative information about all health

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

care delivery options, not just managed care, to make educated decisions. Making an informed choice about managed care requires an understanding of the differences between managed care and fee-for-service plans and the availability of comparable information about both types of plans on which an intelligent decision can be based (Sofaer, 1993a; Varner and Christy, 1986). The lack of objective comparative data about various types of health plans makes it even more difficult for Medicare beneficiaries to behave as informed consumers.

Many consumers say that they are not interested in overall satisfaction information because they do not know how to interpret it or what biases it reflects. Health care administrators and clinicians also told us this in early focus groups conducted by the Picker Institute/Commonwealth Program for Patient-Centered Care. Patient surveys should allow patients to report about their experiences with a plan's health care, as well as rate their overall satisfaction. Correlating patient reports about their experiences with satisfaction ratings can elucidate patient priorities for different aspects of care and predict which aspects of care will influence disenrollment. Combining these different evaluations of care in consumer information may increase the usefulness of these kinds of data to consumers.

Much of the available information about the informational needs of Medicare beneficiaries speaks to the need for providing a way to evaluate the trade-offs between cost, access, and quality for consumers. A Medicare manager from one of the largest and oldest managed care plans in the country talked at length about how value-conscious and shrewd potential Medicare enrollees have become, making almost actuarial-like decisions to compare how much they might save or lose, depending on their personal health needs and utilization history.

Consumers on fixed incomes pay close attention to their out-of-pocket expenses and would benefit greatly from a method of determining those costs that reflect their own health problems. The illness-episode approach developed by Sofaer and Davidson (1990) may be a way of providing information to Medicare beneficiaries and their family members that will allow them to make informed choices about the best plan for them, depending on their health status.

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

Focus groups conducted by the Picker Institute and NCQA suggest that consumers want information about how others like them fare in the health care system, with respect both to their experience and satisfaction with a plan's care and in terms of outcomes. The incorporation of patients' experiences with care, satisfaction, and outcomes data into the illness-episode approach could become a very useful way of providing information for people with chronic health problems.

Many Medicare beneficiaries may have few choices among plans, and the same plan may have different arrangements with physicians and hospitals and, in some instances, may even have differences in the services that they provide in the same geographic area. In the future, information that allows consumers to evaluate the care provided by different plan centers (clinics) or physicians may be the most valuable to consumers. We think that collecting and presenting these levels of data will become increasingly important. Devising cost-effective methods of collecting valid center- and physician-level data will be a major challenge in the future.

Below we present a typology of information that might be of most interest to Medicare beneficiaries. Some of the information is descriptive and would be presented in tabular or narrative format. Other information would require standardized data collection from a sample of Medicare beneficiaries receiving care across all types of delivery systems.

Typology of Consumer Information

PLAN/PROVIDER (FFS) INFORMATION (Structural Information)

  1. Premium and copayments
  2. Rating of hassle factor of paperwork
  3. Brief summary of contractual arrangements with providers: incentives to reduce utilization
  4. Medical/loss ratio of plan, if appropriate
  5. Comparable information for fee-for-service plans
  6. Description of grievance and disenrollment process
  7. Percent disenrollment of Medicare beneficiaries

BENEFIT PACKAGE (Structural Information)

  1. Description of the standard package
Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×
  1. Coverage for special concerns of the elderly: prescriptions, foot care, home care, long-term care, other supplemental coverage.

QUALITY (Accreditation and Survey-Based Information)

  1. Accreditation status
  2. Percentage of board-certified physicians
  3. Patient reports and ratings of care for all members and for members over age 65:
    1. Member services:
      1. member support
      2. prior approval process
      3. restrictions on referrals for specialty care, special services
    1. Access:
      1. appointment waiting times
      2. visit waiting times
      3. choice of primary care physicians and specialists
    1. Communication and interpersonal skills
    2. Coordination of care
    3. Information and education
    4. Respect for patient preferences
    5. Emotional support
  1. HEDIS and other technical measures appropriate for a Medicare population.

Finally, we recommend that AHCPR's Consumer Assessment of Health Plans Survey project incorporate the informational needs of Medicare beneficiaries into the design of surveys and report formats. This effort to collect national comparative data for all other consumers could serve as the vehicle for capturing and presenting information to the Medicare population in the future. As all consumers become familiar and accustomed to using these kinds of data and information, there is no justification for recommending that they or the providers of care switch to a different survey or report format for the Medicare population. As we lay the foundation for collecting and disseminating consumer feedback now, we should develop a system that works for everyone. More important, why would we ask the Medicare population to shift to new surveys and report card formats at a time when it is most important for information to be clear and comprehensible?

Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
×

Why Does All of This Matter: Personal and Policy Implications

Making the right choice of a health plan is extremely important to older Americans. Older consumers need to establish a relationship with a physician and understand how to get the best care for their limited dollars. Their health care needs are likely to be more extensive than those of younger patients. Continuity of care and good communication with a doctor are likely to improve their subjective well-being and functional status.

From the perspective of the federal government, managing the costs of the Medicare program is extremely important. Helping Medicare beneficiaries make the right decision and making them comfortable with new organizational and financing arrangements will require providing them with the kind of information that they value and can interpret.

A recent Price Waterhouse study on the impact of disenrollment estimates that it costs plans close to $1,300 per Medicare disenrollee. Medicare enrollees may be less likely to change their choice of providers if they are initially given better information. They will also be better consumers in general if they understand their rights under managed care and how to make the plan work for them.

References

Acito, F. 1978. Consumer decision making and health maintenance organizations: A review. Med. Care 16:1.

Allen, H.M., H. Darling, D.N. NcNeill, and F. Bastien. 1994. The employee health care value survey: Round one. Health Affairs Fall:25-41.

American College of Physicians. 1988. Comprehensive functional assessment for elderly patients. Ann. Intern. Med. 109:70-72.


Berki, S.E. and M.L.F. Ashcraft. 1980. HMO enrollment: who joins what and why: A review of the literature. Milbank Quarterly 58:588.

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Suggested Citation:"I What Information Do Consumers Want and Need: What Do We Know About How They Judge Quality and Accountability?." Institute of Medicine. 1996. Improving the Medicare Market: Adding Choice and Protections. Washington, DC: The National Academies Press. doi: 10.17226/5299.
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Medicare beneficiaries are rapidly moving into managed care, as attempts to restrain the growth of this costly entitlement program progress.

However, advocates for patients question whether the necessary information and structures are in place to enable Medicare consumers to select wisely among private-sector managed care options. Improving the Medicare Market examines how to give Medicare beneficiaries the same choice of health plan options enjoyed in the private sector—yet protect them as consumers and patients.

This book recommends approaches to ensuring accountability and informed purchasing for Medicare beneficiaries in an environment of broader choice and managed care—how the government should evaluate and approve plans, what role the traditional Medicare program should play, how to help to elderly understand their options, and many other practical matters.

The committee discusses the information requirements of Medicare beneficiaries and explores in detail how best to respond to their special needs. And it examines the procedures that should be developed to provide the necessary protections for the elderly in a managed care system.

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