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Discussion Paper

Informing Older Consumers About Health Care Quality (continued)

Information Sources

Older Americans currently use a wide range of sources of information in general, and an equally wide range of sources of health information and information about health care quality. They are more likely than other cohorts to seek information and advice from physicians and other trusted clinicians and even administrative health care professionals. They are also more likely to seek specific recommendations to follow rather than information to facilitate their own, more independent decisionmaking. Although they indicate considerable mistrust of health plans and insurance companies and brokers, in fact these are among the most ubiquitous and frequently used information sources for particular choices. In many cases, these information sources seem to be the most easily available and accessible. There is little recognition that they may be inappropriate sources of completely objective comparative data.

Studies have noted that older people tend to we nonmedical information sources for health advice more frequently than do younger people.32 An early market research study noted the tendency for older people to use "informal" rather than "formal" sources of information more frequently than younger people.33 Indeed, with respect to health, older people seek information and advice from family members (including their spouses), close friends, and even acquaintances. Personal sources of information appear to be preferred to gathering information through a "cold" medium such as print. In fact, a significant portion of older Americans, especially those with limitations in activities of daily living (ADLs) and independent activities of daily living (IADLs), or with cognitive impairments or low literacy levels, depend heavily on family members and other informal caregivers not only as information sources, but as proxy decisionmakers (whether or not with legal sanction).

According to the 1994-96 Disability Supplement to the NHIS, in 1995 34 percent of noninstitutionalized persons 70 and over received help or supervision with at least one ADL or IADL. Over 12 million caregivers were providing this help, 73 percent on an unpaid or informal basis. Ninety-one percent of these helpers were family members and 51 percent lived with the older person. A quarter were spouses and slightly more than half were children.34 Caregiver burden is a problem that potentially limits the ability and willingness of these "surrogate decisionmakers" to search out information and use it, except in a crisis. Caregivers have different preferences for health-related information sources than the older people they assist:

  • Eighty-one percent reported using printed materials, especially pamphlets (43 percent).
  • 69 percent reported using TV, radio, or tapes.
  • Over half said they would like to get information over the phone or face to face. About a third wanted to receive information on the computer or over the Internet.35

In focus groups, caregivers mentioned a wide range of sources, including: doctors' offices, hospital social workers, insurance companies, the Medicare & You handbook, retiree benefits administrators, social services departments, friends, and the telephone book.

Few were aware of the toll-free number or Web site of the Health Care Financing Administration (HCFA). 36

Older Americans themselves also use a wide range of media to get information in general. The most frequently reported information media used by people over 55 include TV news (85 percent); newspaper headlines (63 percent); the front page (59 percent); and radio news (40 percent).37 More specifically, with respect to the Medicare program, studies conducted for HCFA indicate the top five information sources included their Medigap insurer, their doctor's office, the local Social Security office, the Medicare claims processor, and HMOs.38 The first Medicare & You Fact Sheet noted that 29 percent read printed materials from Medicare, 16 percent called an 800 number, 17 percent met with someone from an insurance company or HMO, while only 3 percent used a Medicare counselor.39

In spite of this wide range of available and used resources, recent focus groups conducted with people on Medicare in New York City indicate that while older people trust their friends, family members, or doctors to give them information, they did not believe they had anyone they could go to for information to compare all their health care options.40

The proportion of older persons with access to Internet-based information sources is lower than that of younger persons. In 1998, while 28.6 percent of Americans age 45-54 used the Internet, only 11 percent of those age 55 and above did.41 An AARP survey found that computer users age 45 and above lacked confidence in their computer skills, and were concerned about privacy.42

However, growth in Internet access is fastest among this population, and a recent assessment projected that use will almost triple by 2004.43 As new cohorts of people who have become computer-literate "age into" this group, the potential for using the Internet will rise significantly. Hopefully, technological changes will make access possible even for those with sensory impairments or physical limitations.

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Key Issues in Educating and Motivating Consumers to Use Quality Information

Identifying Key Messages and Framing Strategies

Currently, older Americans are only beginning to be aware that health care quality is variable and not always good, and that the quality of their health care is at stake when they make health insurance coverage decisions, especially in the context of managed care. They are far more likely to attribute the quality of their health care to the characteristics of their physicians, or even to themselves, for example with respect to accessing preventive health services.18-20 Many have serious questions about how HMOs will affect their health care, but they tend to see the issue primarily in terms of:

  • Giving up provider choice and direct access to procedures and specialists.
  • Having to deal with rules and limitations that create access barriers.

They rarely have a sense that HMOs might be able to act in ways that improve their access to higher quality health care.44 While they may recognize the financial incentives within HMOs to limit services (underutilization), they rarely if ever recognize the incentives in fee-for-service systems to provide unneeded and expensive services (overutilization). In general, older people have had a limited understanding of the basic Medicare program and of supplemental insurance;45-47 recent research has revealed they have little understanding of key differences between managed care and fee-for-service options within the program.48 Providing comparative information in this context is an uphill battle, since many do not recognize its relevance to their lives.

The current National Medicare Education Campaign (NMEP) conducted by HCFA has depended primarily on the dissemination of both background context information and comparative quality data through annual mailings of Medicare & You and the Medicare Compare Web site, as well as a telephone hotline. It is important to note that Congress specified in considerable detail what kinds of information HCFA should disseminate, as well as how. Sometimes this forces HCFA to expend considerable resources on approaches, such as the mailing of a Medicare & You handbook to every household with a person on Medicare, that might not be cost effective, given the reality of scarce resources.

One element Congress did not specify, but that HCFA has wanted to pursue, is an overarching campaign to communicate more fundamental messages that would not only inform older consumers, but motivate then to access and use quality information. Unfortunately, at this date there is still no such campaign, and there remains an urgent need to identify a set of key educational and motivational messages, some of which, though probably not all, will be "actionable." There is also a need to identify the best ways of framing those messages (e.g., do we emphasize the positive? how can people benefit from picking a good plan? or the negative, how people might be harmed by picking a bad plan?).49

Currently, there is no forum through which those concerned about quality care for older Americans can reach a consensus about these messages and frames and decide by whom and how those messages will be brought forward. Clearly, HCFA needs to be centrally involved in these discussions, but a wide range of both stakeholders and experts is needed to reach a meaningful consensus and to develop the momentum to generate both resources and political support to mount a major information campaign.

One approach that has been suggested is to identify features that distinguish the major choices available to older people, and to spell out the concrete implications of those features. Ideally, these implications would be dimensions of care that could be addressed through available quality data. Thus, for example, a distinguishing feature of Medicare HMOs compared to "original Medicare" is that you have to go through a primary care provider to get referrals to most specialists. The implication is that you might not always get access to a specialist when you want one, or you might be unhappy with the specialist(s) available.

Providing this kind of background may make data from Consumer Assessment of Health Plans (CAHPS®) on people's experience getting access to specialists more salient and more comprehensible. A cautionary note here: we are far from having the health services research evidence base to identify with precision the most consequential factors distinguishing managed care and fee for service, both of which have been around for a while. We are even further from having more than the vaguest understanding of how either of these options relates to a new choice such as a private fee-for-service plan!

However, we may also need to take a step back and decide what it is we want older consumers to do, and why it is to their benefit for them to do it. This may be quite problematic when the actual choice context is both so variable across the country and so volatile. Do we tell people to learn about managed care when there are no plans in their area, or right after many of them have withdrawn from the market? What do we want people to understand about the "original" Medicare fee-for-service program, which we presume (probably inaccurately) that they actually understand? And what about the new options?

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Developing "Broadband" Multi-Media Educational Campaigns

Obviously, it is not enough to develop key motivational and educational messages and framing strategies. The messages need to be presented to older Americans not just once, but over and over again, and not through just one communication channel or medium, but through multiple channels and media. In the world of tobacco control, for example, people talk about "persistent and inescapable cues and messages" about the dangers of smoking or the intentions of the tobacco industry. Given the literacy problems of older Americans, it is essential that such a campaign depend primarily on non-print media, which have been seriously underused so far.

Given the cultural and linguistic diversity of older Americans, it is also essential that such a campaign be developed not as a "one size fits all" mode, but with different versions of the messages crafted for distinct groups that might be defined not only by language and culture, but by other characteristics that affect the choice context, such as health status, region, or market. Other methods for segmenting the market are also being explored, including the use of the Prochaska "Transtheoretical Model" that tailors health-related behavior change information to the degree of readiness of the individual to contemplate, make, or consolidate change. Note that tailoring to different subgroups involves much more than translation for people whose primary language is other than English. It involves recasting the statement of the message, its presentation, and methods of dissemination (select Improving the Supply and Delivery of Quality Measures).

Many are beginning to talk about the use of stories as well as numbers in presenting information to older (and other) consumers; stories are especially appropriate as a vehicle for carrying key messages, and can be creatively customized for different audience groups. According to research in persuasiveness of evidence, statistical evidence has been found to enhance both systematic and heuristic processing while narratives enhance only heuristic processing. Thus, stories cannot replace numbers entirely, but they may help older people find the "heuristics" or "rules of thumb" that they need to apply numbers to their own decisions.50

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Reaching, Motivating and Educating Family Members and Friends

As reflected in the data presented under Distinctive Characteristics of Older Consumers, large numbers of older people cannot take full responsibility for making health care choices. Either formally or informally, they depend on family members, close friends, and in some cases professionals who serve as guardians or conservators. In some cases, these surrogates are making decisions; in others, they are helping older people make decisions; often, the boundaries between these two poles are fuzzy and vary over time. Nevertheless, it is essential that this audience be viewed as a distinct target of messages about health care quality.

On the one hand, quality issues may be quite salient to this group, since it is more likely that their relative or friend has serious health problems and perhaps disabilities and/or impairments. On the other hand, many of them are already so burdened by the enormity of the tasks they are undertaking for their relative or friend that they have little time and energy to give to examining quality issues.* Indeed, to perhaps a greater degree than for older people themselves, attention is given to making a change in health care arrangements in response to some kind of crisis, whether it be a health crisis, a financial crisis, or a need to move someone to a different part of the country or living situation.

We are just beginning to learn about this audience, and need to carry out considerably more basic research on its characteristics, motivations, and concerns, as well as applied research on how to motivate and educate it. Few products have been developed specifically for this group (an exception is the wonderful brochure produced by the Kaiser Family Foundation in collaboration with the Medicare Rights Center, entitled Talking to Your Family About Medicare).

This audience, like older consumers, is highly diverse in terms of such key dimensions as language/culture, educational level, and information sources. We should not assume these people know any more about the Medicare program than do older people themselves. They typically bring their own experiences to bear when they have to act on behalf of an older relative, but some aspects of that experience may be misleading to them. They want and need to make the right decision as quickly as possible. Hopefully, their cognitive capacity and health literacy will to be higher than their older relatives' and friends', but we cannot always count on this. Recall that spouses as well as siblings (themselves older) are in this group. As noted above, at least some may be more willing and able, today, to use Web-based information sources, for example, and may have sufficient numeracy to understand more detailed numeric and graphical presentations of comparative data. However, before they reach that point, they too need to be motivated and provided with background education. For example, few seem to have any idea that there is a network of health insurance counseling programs around the country that is available to them, as well as to older people.

In addition to encouraging campaigns that target this group specifically, we may want to explore how to link efforts to reach working adults who are making decisions for themselves with efforts to educate a subset of these people who are surrogate decisionmakers for older Americans. Another option to consider is beginning the process of preparing the "near elderly" for Medicare somewhat earlier than has been done. As the age distribution of older Americans changes, more and more of the "surrogates" are themselves going to be either over 65, or quite close to it.

* In recent focus groups we conducted for HCFA with this group, we found it difficult to recruit those who were caregivers for seriously ill older people, since they did not want to give up precious time needed for personal chores or just plain respite in order to attend a focus group.

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Key Issues in Improving the Supply and Delivery of Consumer-Oriented Quality Measures

This task refers not to providing the educational and motivational context for using and understanding quality data, but to the delivery of the comparative data itself. However, many of the points made above are relevant to this task as well. For example, considerable work is needed on improving the delivery of consumer-oriented quality measures to family members, friends, and other surrogate decisionmakers and advisors. In addition, it is essential that we address the diversity of the senior audience in delivering comparative data as well as background information and motivational messages.

Far more quality information is available consistently for older consumers than for any other group, as a consequence of congressional mandates and of initiatives undertaken by HCFA, both independent of and related to those mandates.* On the other hand, this quality information has only been available for a couple of years, and it has yet to cover the full range of options from which older people can choose, including both information on newly emerging options and information on options available to those with retiree health benefits (compare with Developing Consumer Relevant Quality Measures). In this section, therefore, we will emphasis issues of dissemination, presentation of quality measures, and decision support.

* Employees of many firms in states such as Minnesota and California, with active, large and quality-oriented business and health coalitions, may have even richer data available to them but they are not yet the "rule."

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Dissemination Channels

As noted above, the primary channels currently used to present health care quality information to older adults are print materials, phone hotlines, and the Internet. This does not fit with the channels they are most likely to access and use, especially given their literacy problems and desire for more personal rather than impersonal methods for information acquisition. It is essential that we begin to use other channels, in particular TV, radio, video, slide presentations, and audio tapes, in addition to the media currently available.

Of course, cost is an issue that has clearly limited, for example, HCFA's ability to explore these options. Slide presentations may be particularly useful because they are not expensive to develop and can be adapted and changed to meet the needs of different regions, different audiences, and different points in time. Such presentations can be used in a wide range of settings. Trained volunteers like those currently used by most State Health Insurance Information Programs (SHIPs) can introduce the video to a group of older people and field questions the presentations may provoke. The slide presentation introduces an element of consistency in message and presentation which is valuable since it makes the process less dependent (though not entirely independent) on the characteristics of the particular presenter.

Indeed, the primary issue facing those who want to provide comparative quality data to older Americans is the need to develop and sustain a viable infrastructure for adding a personal component to the process. Only over the last couple of years has significant research begun to:

  1. Identify the full range of roles that different "information intermediaries" can play.51
  2. Identify and assess the capacities, constraints, and appropriateness of different potential intermediaries with respect to playing those roles.52
  3. Describe the ability and willingness of various kinds of intermediaries to perform roles related to the actual dissemination of comparative quality information, and to the training and materials they need.53

We have identified the following roles, or tasks, for intermediaries working with older people:

  • Promote, legitimate, and disseminate information.
  • Connect specific individuals with information when they need it.
  • Provide, explain, and apply information to specific individuals' needs/circumstances.
  • Provide decision support.

We have also identified a wide range of types of intermediaries, and classified them in terms of the closeness of their relationship to the older person (select to access Appendix A). They range from family members, friends, and professionals who are surrogate decisionmakers or advisors, through a variety of health care professionals to SHIPs and similar counselors, and then to community-based senior-serving agencies without a specific mandate to provide insurance counseling, and then to more impersonal "intermediaries" such as health plans and Web sites. The following issues have emerged from the research and demonstration efforts to date:

  • Even mandated insurance counseling agencies such as SHIPs are less familiar and comfortable with information on quality than they are with data on benefits, premiums, and plan ground rules. There may be some resistance to engaging with quality data, even when its importance is recognized. Extensive training and specially designed materials will be required to fully mobilize and target these resources. Local agencies will want to put their own special local stamp on materials. The overall level of available resources for mandated insurance counselors is almost certainly insufficient; indeed some SHIPs have paid staff only in management positions. We need to think about ways to improve the efficiency of the information infrastructure, for example by having only a small subset of paid or volunteer counselors who are "quality experts" to whom internal referrals are made.
  • Agencies without a mandate to provide insurance counseling rarely have the resources and capacities to be "hands-on" intermediaries with respect to quality issues, even when provided with educational materials and training. It may well be more appropriate for such agencies, which are likely to have very particular client constituencies, to be a vehicle for promoting the availability and relevance of information, for legitimating new information sources, and for making referrals to those sources (e.g., the SHIPs, retiree health benefits counselors). They may also be very useful supports for those who are trying to customize materials to different audiences.
  • A wide range of intermediaries does appear capable of learning more about how to identify when a particular older person may be in need of information on health care choices and quality, if provided with appropriate training and tools such as "profiles" and "checklists." More work is needed to develop of such training and tools. We can begin with training packages that already exist, adding modules to them.
  • The demand for information (especially in the absence of a major media campaign) is fairly low and highly unpredictable at this point. This, combined with frequent turnover among both paid staff and individuals, creates challenges for actually sustaining whatever is achieved through training, which must be more than "one-shot." We may also need to be creative in taking advantage of events (such as HMO withdrawals or relevant research that gets media play) to be proactive in reaching out to our audiences.

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Presentation Strategies

Much more is known about effective and ineffective methods for presenting comparative data than about how to disseminate data effectively. However, there is still work to be done in such "classic" presentation issues as:

  • Statistical and face validity of composites.
  • Effective ways to present comparative vs. absolute data, and the relationship between them.
  • Effective ways to layer information, especially by taking full advantage of interactive environments such as the Internet, at least for the subset of older people (and information intermediaries) who are capable of accessing and using this medium.

In addition, there are additional questions and issues for which we need innovation and experimentation, including the following:

  • How can we either reduce even further the length and complexity of our materials, especially for low-literate audiences, or at least produce supplemental materials that are not so daunting?
  • How can we address the issues around the size of differences among options? These include:
    • How much of difference in scores is needed to get people's attention?
    • If there are large differences in some areas and few or no differences in others, will this cause people to pay attention to those large difference areas even if they are not terribly important to them, just to feel less uncertain?
    • How do we keep people from paying too much attention to small differences? What language/stories/examples will work to explain the underlying statistical concepts?
  • How can we use stories as an alternative or a supplement to numbers to help older people make the link between information and their decisions?
  • Given that older people are more used to information about benefits and premiums, and that they will certainly continue to want such information, how can we better integrate quality information with other comparative information, and, ideally, link the two?
    • For example, we have developed a two-page piece on prescription drugs in Medicare HMOs in New York City that presents premium and coverage on one side and CAHPS reports from consumers on their experiences getting the drugs they need. Linking the two is information explaining that managed care plans usually have formularies and may thus not cover the drugs a person is used to getting.
  • Finally, there is a set of options that becomes available when comparative information is provided through a person who can help with comprehension and application. In particular, a trained counselor is in a position to provide a different kind of "layering." That is, rather than providing all the available information at once, counselors can dole out information in smaller chunks in response to their assessment of both the individual person's cognitive capacity and particular interests and concerns.
  • Also, in our New York City work, we developed one overview booklet and five topic-specific booklets that span premiums, coverage, access, and quality. While we hope everyone gets the overview booklet, we provide, in our training, an approach to determining how to order the presentation of the topic-specific booklets.

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