I. PROJECT BACKGROUND, GOALS AND OBJECTIVES

Background

This project is a practical response to the paucity of useful information that consumers, particularly those with disabilities, need to make a thoughtful choice among different health care plans. Our aim is to supply relevant information in such a way that actually changes the way people choose among different plans. In other words, the ultimate purpose of this project is to create well-informed consumers of health plans. By consumers, we mean end users of health care services rather than institutional purchasers and other intermediaries.

In the classical economic theory of "perfect competition", the independent well-informed consumer plays a central role in the competitive health care marketplace by judiciously choosing among similar products based on their price and quality. In the current healthcare marketplace, however, several factors directly undermine the role of well-informed consumer (Weisbrod, 1983). The project described below was conceived to respond to these factors and to take into account those market conditions described below that do not enhance consumer knowledge.

First, health care plans do not offer standardized benefits. Without a homogenous product, effective price competition is difficult to achieve, and consumers must compare apples with oranges rather apples with apples and oranges with oranges. Needless to say, health care plans are far more complex than fruit. Sweetness, flavor, and texture are nothing compared to deductibles, copayments, annual and lifetime maximums, physician reputation, convenience, and courtesy. Indeed, to switch metaphors, health care plans often are characterized as moving targets, impossible to pin down as to coverage and price. This presents a serious obstacle to providing reliable and valid information to consumers.

Second, insufficient information exists that indicates what would happen if health care coverage is not purchased compared with what would happen if it was obtained. AHCPR currently supports Patient Outcome Research Team (PORT) research to assess the efficacy of specific medical treatment procedures and shared decision-making programs (Casper et. al., 1992) have been developed to involve the patient in making treatment decisions. Report cards based on mortality data and consumer satisfaction comparison ratings have attempted to fill this gap. Unfortunately, the reliability and validity of these data are frequently challenged (GAO, 1994) although some efforts have begun to standardized consumer satisfaction ratings (RTI, 1995) and set national accreditation standards (NCQA, 1994). Other information such malpractice data exists but is not available (with some good reasons) to the general public.

Third, decision-making is often relinquished to agents who are sellers and providers of health care coverage or, like company benefit managers, represent interests other than the end user of the health care plan. As we describe in our guidebook marketing representative can often mislead individuals about coverage availability; brokers may represent a limited number of plans from which they receive commissions; and company benefit managers must pay heed to the financial needs of the firm as well as the interests of the employee.

In addition to these direct factors, several conditions in the health care marketplace indirectly, but substantially, exacerbate the problems consumers face in making thoughtful choices about health care plans (DeJong and Sutton, 1994). In the health care industry, providers and payers rather than consumers set prices. A second condition is the prevalence of experience rating which forces health plans to compete on the basis of risk and price rather than quality. These health care plans design their coverage package and price to appeal to low users of health care services and discourage enrollment by high user of services such as individuals with disabilities. A third, related, condition is absence of risk or case-mix adjustment to reflect the different utilization rates of consumers. Without risk adjustment, plans have little incentive to enroll or subscribe high user groups such as people with disabilities. A fourth problem is the under-representation of consumers in the governance of the health care system. The boards of private health care plans are dominated by physicians and business people. Even accrediting agencies like the National Committee on Quality Assurance substantially involve consumers in setting standards and evaluating health plans.

This analysis helped us the shape the goals and objectives of this project. It also led us to formulate two key principles that would guide us in designing the decision support system. Foremost, we sought to create information that is based on the actual experiences of people with disabilities. We believed that people want to hear how other similarly situated individuals evaluate their health care options and go about choosing a health care plan. While this seemed key, we also believed that people would prefer additional input and lots of it. It would be our job to transform these data into useable information by reducing distilling it and packaging it in engaging ways.

Project Goals and Objectives

The goal of this SBIR project is to develop a Decision Support System to help people with disabilities, particularly those with physical disabilities, choose health care plans that best meet their needs. Given the scarcity of resources, especially during Phase I, we decided to focus on individuals between the ages of 18 and 65 with severe mobility impairments. Examples of specific conditions include:

• amputations
• post polio
• cerebral palsy
• spina bifida
• cystic fibrosis
• spinal cord injuries
• multiple sclerosis
• head injuries
• muscular dystrophy
• stroke

Persons with these conditions tend to have a common constellation of health problems such as decubitus ulcers, urinary tract infections, respiratory tract infections, and osteoporosis.

The Decision Support System, tentatively entitled Choosing A Health Care Plan for Independent Living, will include both "low tech" products such as brochures, guidebooks, and workbooks, as well as a "high-tech" products such as a videos and an interactive CD-ROM program. In their final form, these products will be available in a variety of accessible formats including braille, audiotape, closed-captioning, and voice activated computer diskettes. While each informational format will be designed to stand alone, they will be linked by common content. For example, both the draft guidebook and the prototype CD-ROM program developed in Phase I contain anecdotes of how health plan information can mislead consumers in to believing that services they thought would be available actually are not. In the guidebook this information is conveyed in text; whereas in the CD-ROM program it is convey in a voice narrative presented as a radio call in show. The brochure we will develop during Phase II will distill some of the information presented in the guidebook.

During Phase I, we focused our efforts on producing two major products: (1) a detailed guidebook including worksheets for assessing the cost and adequacy of different health plan and a glossary of terms, and (2) a CD-ROM program presenting a wide array of information ranging from a physician's perspective on the health care needs of individuals with physical disabilities to the personal experiences similarly situated people have had in choosing a health care plan.

To accomplish the goals of this project, we sought to complete three major objectives.

(1) Determine the information needs of people with physical disabilities. This objective addresses how people with disabilities assess the key features (price, benefits, restrictions, etc) of a health care plan, relate these elements to their own health care needs, and assess quality of care.

(a) What are the salient factors people with disabilities consider in choosing a health care plan?

(b) What are the trade-offs people with disabilities consider in choosing a health care plan?

(c) What sources of information do people with disabilities use in choosing a health care plan?

To achieve this objective, we relied mainly on focus group interviews with persons with disabilities. These focus groups were conducted in the Oakland, California, and Houston, Texas to vary consumers input from those from a highly competitive and richly developed and predominantly managed care marketplace to a less developed fee-for-service environment. We also conducted key informant interviews with health care and disability experts including experts with disabilities across the country.

(2) Validate the content of the decision support system. This objective is aimed at developing a decision support system that has a high likelihood of improving consumer awareness and fostering independent decision-making among people with physical disabilities. Specific questions include:

(a) What factors should we consider in optimizing the reliability, comprehensiveness, accuracy, objectivity, and usefulness of the decision support system?
(b) What outcomes should we expect to observe from consumers exposed to the guidebook and CD-DOM program?

To answer these questions, the project team conducted open-ended key informant interviews with researchers, policy experts, and disability advocates/consumers.

(3) Develop a prototype of the decision support system. Early in the project, we realized that we did not have sufficient resources to develop a variety of low- and high-tech products. Accordingly, we focused our efforts on developing a substantial "low-tech" guidebook and a comprehensive CD-ROM product. One measure of the success of this project is how success the project team has been in producing prototype versions of the guidebook and CD-ROM program. Specific research questions include:

For several reasons, we decided to allocate scarce project resources to obtaining an independent review of the technical and substantive aspects of the CD-ROM version of Choosing A Health Care Plan For Independent Living. Because the content of the CD-ROM duplicates some parts of the guidebook, independent review of both products would be redundant. Furthermore, we anticipate that all Agency reviewers would have the expertise to evaluate the guidebook, but few would have the expertise to assess the technical merits of the CD-ROM program. Finally, even though the technology will soon become widely available, we perceived that not all Agency reviewers could readily view the CD-ROM program. Thus we hired independent consultants to provide a detailed review.

In the next section we describe the methods used to achieve these objectives.

For people with disabilities, choosing a health care plan poses problems due to:

II. PROJECT METHODS

OVERVIEW

In this chapter, we describe the variety of methods used to pursue project objectives. We conducted focus groups and key informant interviews to understand how people with disabilities think about health care choices. In addition, we conducted key informant interviews with a national sample of researchers, policy experts, product developers, and advocates in the fields of health care and disability. Based on input from these sources, we drafted sections for a written guide to choosing a health care plan and drafted scripts and other materials for use in the CD-ROM. Starting with these draft materials we engaged in an iterative process combining the content and technical aspects of each products. The most challenging aspect of this process was blending of content and format of the CD-ROM. At the end of the project, we also sought an independent review of the CD-ROM from disability and computer technology experts.

To ensure against geographic and market provincialism, focus groups were conducted in Oakland, California and Houston, Texas. Differences between the population of the two states are shown in Table 1. State and national population data shows that a lower percentage of Texans have completed high school than have Californians and all U.S. residents. However, the percentage of Texans who have completed college is equal to that of the entire U.S. population. The rate of severe work disability and mobility difficulties are about the same for both states, while the rate of self-care difficulties is higher in California. On the other hand, the rate of need for assistance in Instrumental Activities of Daily Living (IADL) or ADL is higher in Texas.

Table 1

Differences in the health care markets in Texas and California are shown in Table 2. This table indicates clearly that Health Maintenance Organizations (HMOs) are far more prevalent in California than in Texas, but that Preferred Provider Organizations (PPOs) are more prevalent in Texas. These data suggest that Californians are more likely to be oriented toward HMOs than are Texans. Conversely, Texans are less likely to experience health care through a HMO and more likely, we believe, belong to a PPO or fee-for service plan.

Table 2

Aware that this orientation might bias the results of the focus groups, we were careful to take it into account during the analysis of focus group data. We were also concerned that the guidebook, which was developed by the Houston-based study team would be oriented toward fee-for-service and PPO plans, and that the CD-ROM developed in California would reflect HMO experiences. To avoid these biases, the two principal investigators exchanged draft versions of the guidebook and CD-ROM scripts, talked frequently via the telephone, and had two extended face-to-face work session in Houston. Later, we report on how successful we were in integrating these perspectives.

FOCUS GROUP DISCUSSIONS

In order to learn more about how people with physical disabilities choose among different health care plans, BPA and ILRU conducted focus group discussions in Oakland and Houston, respectively. These group discussions addressed four broad topics related to choosing a health care plan, namely:

1) What are the salient factors that people with physical disabilities consider in choosing a health care plan?

2) What issues arise among people with physical disabilities in obtaining quality health care as defined above?

3) What sources of information do people with physical disabilities rely on in selecting a plan? and

4) What formats (brochures, videos, computer software, etc.) are preferred?

Two focus groups were conducted at each site; one group was composed solely of women while the other group was composed of men and women. All individuals had physical disabilities (e.g. paraplegia, multiple sclerosis, etc.) and/or chronic illnesses (e.g., diabetes, enlarged heart, etc.). The Houston groups, however, had more participants with severe mobility impairments. All participants resided in the East Bay area of Northern California (Berkeley, Oakland, Hayward, etc.) or the metropolitan Houston area.

Each group discussion was recruited using an identical protocol (see Appendix A: Focus Group Telephone Screening Instrument, Participant Recruitment, and Moderator's Guide). Recruitment activities included posting of notices in Independent Living Centers and other organizations for people with disabilities such as Easter Seals. We also used word-of-mouth and advertised at wheelchair manufacturing and repair shops.

In Oakland, meetings were held on at BPA's meeting room facilities. ILRU sponsored groups were held at a centrally located hotel in Houston. Each group was moderated by an individual with a physical disability. Training of the moderators and assistant moderators was provided by the Principal Investigator, and detailed protocols were used to insure uniformity (See Appendix XX).

At 5:45 PM, prior to each group meeting, participants were asked to complete a short questionnaire assessing their demographics characteristics and how they rated the quality of health care they have received under their current health care plan. The seventeen items were derived from several sources including health plan satisfaction surveys and a survey of disabled employees conducted by ILRU. A light dinner buffet was provided to all participants and the formal discussion began at 6:10 PM. Participants were given $25 each and reimbursed for extraordinary transportation needs. Each group was audio-taped. Immediately following each focus group, the principal investigator or co-principal investigator debriefed the moderator and assistant moderator. A summary of each group was prepared based on notes from the debriefings, flip chart notes from each session, and the audio-tapes.

Our original plan was to conduct two rounds of focus groups in each site, partly to guard against "bad" groups and partly to explore new questions that might arise in the first round of discussions. However, we found this unnecessary. Each group was conducted without major problems, results from each group tended to be confirmed by the results from the other groups, and many of these results resonated with results obtained from other focus groups of consumers conducted by the National Committee on Quality Assurance and the Research Triangle Institutes consumer satisfaction survey design project (see Chapter IV).

KEY INFORMANT INTERVIEWS

We contacted experts in the fields of disability, health care, and disability advocacy in order to explore several key technical issues and to confirm the insights provided by focus group participants. We provided each expert with a synopsis of the project and description of the goals and components of the CD-ROM version of the Decision Support System. Specific discussion topics included:

(1) Salient factors someone with a physical disability should consider in choosing a health care plan?

(2) What kinds of information someone with a disability would consider most useful in choosing among competing plans?

(3) Suggestions about any existing material we should review?

(4) Suggestions for making the product stimulating, objective, and useful?

(5) Should we take strong positions on what health care plans are good and bad for people with disabilities?

(6) How can this product be designed to help consumers protect themselves against misinformation provided by health plans and other behaviors that are not in the best interests of people with disabilities?

We compiled a list of approximately 40 individuals gleaned from the academic and trade literature on health care and disability and 30 leaders in the disability arena. In exchange for their mailed-back comments, we promised to send them a summary of this report, and to acknowledge their input without implying endorsement of any product. We also promised to contact by phone those persons who did not return a written response. When circumstance allowed, the Principal Investigator conducted in-person interviews with a small number of these experts. Of the 70 individuals contacted, 45 provided some kind of response.

PRODUCT DEVELOPMENT

The development of the draft guidebook and prototype CD-ROM program ia best described as an iterative process in which substantive issues are considered in terms of the ability of the media (print or CD-ROM) to communicate the essential meaning of the issues derived from the focus groups and key informant interviews. While these source provided essential ideas for form and content of the CD-ROM, several questions remained:

(1) What should be the specific style of each product?

(2) What title best captures these aims?

(3) How should the content be arranged? and (4) What icons, graphics, and other presentation techniques are most appealing?

To answer these questions, we brainstormed among ourselves and, when necessary conducted informal interviews with technical experts and a small number of focus group members and other experts in the disability field.

We based the guidebook on a basic outline of important features of a health care plan and the important issues people with disabilities must encounter in choosing a plan. We developed definitions of important health care terms and concepts that should help to resolve plan coverage, price, and quality questions in terms of consumer needs. We also designed worksheets to resolve difference between service needs and plan coverage, quality needs and quality delivered, and costs and resources. After several drafts, these issues were translated into a draft document answering a series of questions that a typical but highly skeptical consumer might ask about health care plan.

The CD-ROM program also began with drafting preliminary descriptions of the basic theme and each component of the program. Initial ideas were inspired by comments made by focus group members and from feedback form our sample of experts. For example, both experts and consumers recommended that it would we very useful to have a physician's views of the health care issues people with physical disabilities are likely to encounter over the life course. A series of medical questions was then generated and a plan was prepared to video-tape a physician. These descriptions were circulated among key members of the project team for comments.

Perhaps the most challenging aspect of this process was the technical feasibility of specific ideas for each component of the CD-ROM. For example, we had planned to prepare several videos of persons with disabilities discussing their reasons for choosing their particular plan. We also wanted to include other video segments in the program. However, the current CD-ROM technology severely limits the number of video minutes in a given CD. Thus we were forced to reduce the number of video segments and limit their length. As we encountered these limitations, we gradually began to get a clear idea of what we could accomplish in a prototype CD-ROM program given the current level of resources.

INDEPENDENT REVIEW

Given the advance nature of CD-ROM technology, it was imperative to obtain an independent assessment of our prototype. Accordingly, we asked three experts to review the CD-ROM program and submit criticisms and comments to AHCPR based on their expertise. Each experts was asked to assess the CD-ROM program along the following terms:

          9. What other comments and criticism do you have?

By the end of the project, two of the three experts had responded. Comments from the third reviewer will be included with the Phase II proposal.

In the following Chapter we present the results of our project efforts.

III. RESULTS

OVERVIEW

In this chapter, we present the results of the research activities (focus group discussions and key informant interviews) and briefly describe the prototype guidebook and CD-ROM developed during Phase I. We also provide the comments and criticisms of the CD-ROM submitted by our independent reviewers. A draft copy of the guidebook may be found in the Appendix. A single copy of the CD-ROM version (disk and accompanying documentation) has been submitted to the AHCPR project officer. A detailed description of each component of the CD-ROM may be found in the Appendix.

FOCUS GROUPS

Composition.

Table 3 displays the demographic and health characteristics of the focus group participants as well as how they rate the quality of care received from their current plan. Although the participants from the two sites were similar with respect to age, gender, and marital status, the Houston participants were more educated and self-reportedly healthier.

An important difference, as we expected, was that no one in the Houston group belonged to a HMO, while no one in the Oakland groups subscribed to a fee-for-service plan. Participants in the Houston women's group reported much higher satisfaction with their health care plan and rated the quality care received higher than any of the other group participants.

Table 3

Factors and Trade-Offs in Choosing a Health Care Plan?

Participants identified six types of factors they considered important in choosing a health care plan:

In identifying what they consider to be important components of quality of health care, each group of participants made the distinction between what they considered to be ideal health care delivery and what they considered to desirable health care in the real world. When asked to explain the difference, many participants told us that they were so used to inadequate care that they just did not think it was possible to have access to high quality and adequate care.

As the discussion of salient factors in choosing a health care plan evolved, a spectrum of health care plan savvy emerged among participants in each group. Many people, especially women, were sophisticated consumers of health care. For them, issues such as whether the health plan abortions, permitted referrals for acupuncture and other alternative services, and provide specialized information menopause and estrogen treatment played an important part in how they assessed the care they received. These people offered articulate advice about choosing a health care plan: "ask a very detailed question about an obscure service need such as acupuncture and see how they handle it," and how to maximize services: "make two back-to-back appointments with the same physician. This way you'll have enough time to get onto the examining table and be able to ask the doctor questions afterward."

People in this category were very adept ate getting what they wanted from their health care providers using a combination of screening skills for provider selection and knowledge of system operations to exert pressure on providers and payers in order to obtain services and products needed to maintain their health. Notwithstanding this apparent adroitness in obtaining needed services from a system that generally provide for few options, there were significant problems cited by group members. One participant receiving COBRA coverage from her most recent employer reported that because she could not obtain health care coverage from any other provider in the Houston area, she was forced to relocate to another area of the state.

Others belonged to a less sophisticated group of consumers with respect to exposure to choice of health care plans. As one participant put it, "I really have a lot of work to do. I really don't know anything about how to choose a health care plan." The lack of savvy was more prevalent in the Houston groups where choices are more limited and a greater percentage of participants had spent more years enrolled in Medicare and/or Medicaid. We concluded that our efforts to deign products to assist individuals in selecting health care plans need to be relevant to people who have not been faced with choices before and may have relatively little understanding of the influence of various factors on the quality, adequacy, and accessibility of health care services.

Despite the differing levels of knowledge and sophistication, each group agreed that costs was the most important factor influencing their choice of health care. For those in traditional fee-for-service plans, costs were followed by inclusion or exclusion of pre-existing conditions, provider experience with disability, coverage of personal assistance services, and range of covered services. Participants who are enrolled in HMOs were not concerned about pre-existing coverage and tended to rank range of covered services above all factors except costs.

These findings are similar to findings obtained in focus groups with consumers conducted by the National Committee on Quality Assurance (Shelton, personal interview, 1995).

Sources of Information

Without question the consensus among all groups was that the best information on health care plans could be obtained from persons with disabilities similar to one's own who had experience with the plans under consideration. Any information generated by groups or methods that did not include significant involvement of people with disabilities was suspect, including information from company benefit managers, well-meaning relatives, friends and co-worker with disabilities. Furthermore, participants preferred information based on the actual experiences of other similarly situated persons over didactic information even though it may be provided by disability-specific consumer organizations like Independent Living Centers and the Muscular Dystrophy Association. At the same time, however, other sources of information were perceived as useful including marketing brochures, newspaper articles, health plan staff, and health fairs. In conjunction with information and advice from peers, these additional sources were not only views as useful but also as necessary. We interpreted these comments as a demand for reliable and valid data.

Problems with Plan-Provided Information

Focus group members clearly had difficulty with the information that was provide to them by the health care plan itself. Several individuals complained often of lack of forthrightness and sometimes quite bitterly of misinformation. Participants identified several aspects of a health plan for which they wanted detailed information, namely how the plan deals with workers' compensation claims, track record of how they have treated people in the past, what plan facilities provide what services, availability of medication without additives, access to medial records, right to sue, and evidence of gross negligence? Once again, these comments reflected concern for reliable, comprehensive, and accurate information.

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KEY INFORMANT INTERVIEWS

One purpose of the key informant interviews was to confirm information provided by focus group participants. Although there was general agreement with respect to salient factors people with disabilities should consider in choosing a health care plan, our experts raised additional concerns and framed old issues in different language. Expert respondents emphasized access to specialty care along with the range or completeness of benefits. Some respondents added that the ability to assign a specialist (e.g. pulmonologist) as a primary care physician more important than allowing easy access to specialists. Reasoning like this led many respondents to identify choice of physician as a critical factor in choosing a plan. Some experts were able to cite specific data such as "women with disabilities see specialists more often than able-bodied women and they use emergency rooms more often, probably due to barriers to primary care."

It was in the area of information requirements that our key informants provided the most valuable advice. Like the focus group members, key informants identified the need for same types of plan information (premiums, coverage, restrictions, etc.) and the need for subjective ratings based on the experience of people with disabilities, they also emphasized the need for external objective ratings (e.g. NCQA type accreditation) that also takes into account the uniques needs of high users of health care services. And like our focus group participants, the experts expressed a strong concern for reliability and validity, albeit from a professional, research-oriented perspective.

What our key informants made very clear, however, was just how difficult it is to achieve even minimum levels of reliability and validity. Many respondents emphasized the importance of standardizing plan comparisons and avoid methodological biases by administering the same assessment tools in the same way. Likewise, in the analysis, use same decision rules and control for (in the case of ratings and report cards) for differences in health status. Other took a more philosophical approach, commenting that "health care is a morel enterprise so 'objectivity' may be impossible, and "just present the facts as best they can be determined. There are a lot of gray areas.

The key informants were strongly opinionated about whether the decision support system should take strong positions on what health care plans are good or bad for people with disabilities. Answers ranged from "Yes, to a great extent," to "be careful, unless you feel absolutely solid about comparability of data," to "I don't think it is at all appropriate. These is no 'best' plan for all individuals with disabilities." While the range of responses was wide, the most common response was simply to provide as much relevant information as possible for the user to make up his or her mind. When warranted, specific problems can be raised about specific plans as long as there are data to support the claim. This appeared to bring us full circle to the reliability and validity problems discussed earlier.

Finally, we inquired about what outcomes we should expect from someone who uses the decision support system. Some expected total skepticism that such an intervention would really motivate people to change. Others thought that the information would motivate people to change plans and that one could observe measurable indications such as reduced out-of-pocket expenditures and increased satisfaction with health care received. Still others suggested self-reported satisfaction with the information system and testing individuals along the line of a health insurance IQ test.

PRODUCT DEVELOPMENT

As stated earlier, our goal was to develop examples of a set or range of informational materials under the rubric of Choosing a Health Care Plan for Independent Living that in conjunction with other "low tech" and "high tech" products are intended to reach a wide range of people with disabilities. The print-oriented guidebook and multimedia CD-ROM are not finished products. Rather, they are stylized examples of more fully developed and beta-tested products we will complete during Phase II.

Much work remains to be completed. In this section we describe the two prototypes developed during Phase I.

Guidebook Version

A complete draft version of the guidebook version of Choosing a Health Care Plan for Independent Living is provided in Appendix F.

Figure 4-2 displays the cover page of the guidebook. It represents the reality that many people with disabilities face choices in health care. Overtime, we believe that more and more persons with disabilities, even those with the most severe disabilities who qualify for Social Security Insurance (SSI) and Social Security Disability Insurance (SSDI) may be empowered to choose among different health care plans.

Figure 4-3 displays the table of contents of the guidebook version of Choosing a Health Care Plan for Independent Living. The guidebook consists of four sections. Section One is a question and answer discussion of health care plans based on major topics raised during the focus groups and by key informants. We strive to provide examples and facts while offering advice and examples questions that consumers should heed or ask of market representatives and other purveyors of plans. The question and answer technique is intended to goad readers to be inquiring and skeptical. Section Two provides worksheets for consumers to assess their health care plans. This section helps the consumer to specify features of a health care plan. Section Three is a glossary of important term in the health care field. Section Four provides contact information on state insurance departments. These agencies are usually the first regulatory agency to direct complaints.

CD-ROM Version.

The prototype CD-ROM version of Choosing a Health Care Plan for Independent Living was designed to provide interactive access to a wide range of information on choosing a health care plan. The CD-ROM program is designed to work on both Apple and PC platforms. Figure 4-4 displays the opening screen of the program - a picture of an idealized study carrel such that one might find in the most modern of libraries. The carrel contains a TV screen, a boombox radio, a set of books, a clipboard upon which are several topics, and a light switch that allows the user to exit the program. After the program credits and disclaimer role through the TV screen, a narrator welcomes the user and tells she/he that moving the arrow over any item on the screen will cause a brief explanation of the contents of that item to appear on the TV screen. By double clicking on the item, the user can enter a specific subprogram. A narrator then explains how to use each subprogram. To exit any given subprogram, the user may double click on the EXIT sign.

In the prototype, we opted for a study carrel scenario. We also considered two alternative metaphors/scenarios, namely (1) a modern marketplace or an aisle in a supermarket, and (2) A booth at a health fair. During Phase II we will have the opportunity to develop these scenarios and submit them to focus group for guidance.

Below is a brief description of the contents of each item in the study carrel.

Books: Glossary: same as glossary in print version
Legal Guide: Questions and Answers regarding one's rights to health care benefits and employment under the Americans with Disabilities Act of 1990.
Resource Guide: Books and other material related to health care and disability
Bibliography: A list of academic and popular literature on health care, consumer choice, and disability

Radio: Health Plan Talk Radio Questions and Answers: a talk format designed to raise common questions about health plans based on real questions, complaints and advice consumers might have about choosing a health care plan and making the best of the situation once one has enrolled.

Clipboard: Introduction: A five minute video of Lex Frieden, Vice President of The Institute for Rehabilitation and Research and former chair of the President's Council on Employment and Disability. Lex argues why it is important for people with disabilities to become well-informed consumers of health care plans.

Menu Bar. At the top of the study carrel is a "Menu Bar" from which different menu may be "pulled down" by double clicking on the item.

Documentation. A complete set of written documentation is provided with the CD-ROM including:

(1) Know Bugs and Limitations
(2) Getting Started
(3) Technical Notes

IV. CONCLUSIONS

OVERVIEW

In this chapter, we summarize the major research findings and product development results of this project. We also discuss the implications of the findings for consumer choice research and the feasibility of conducting further product development under Phase II of the SBIR program.

SUMMARY AND IMPLICATIONS OF MAJOR RESEARCH FINDINGS

Based on focus group interviews conducted in Oakland and Houston, people with physical disabilities share common priorities and methods of choosing among different health care plans. First, they share a common hierarchy of concerns at the top of which is the costs (premiums, copayments, deductibles, and hidden out-of-pocket expenses). For those with experience mainly in fee-for-service plans, the cost factor is closely followed concerns about pre-existing condition restrictions, then the range of covered services with emphasis on durable medical equipment and personal assistance. Quality of care, while necessary, ranked last in this hierarchy. Participants who are enrolled in HMOs were not concerned about pre-existing condition exclusions, but otherwise shared the same hierarchy of values in choosing a health care plan.

While there seem nothing surprising about these findings, what stood out was the urgency expressed in the need for durable medical equipment and personal assistance. Without them, participants reported that their health status and functional capacity would worsen, and they would find it difficult to fulfill their social roles as husband, wife, lover, friend, and worker.

Despite these expressions of concern, it is remarkable that many participants looked fatefully at choosing a health care plan. Many expressed the belief that choice was genuine. And most distinguished between what is ideal (e.g., personal assistance as a health care cost), desirable (full vs. partial coverage for durable medical equipment), and real (only partial reimbursement for durable medical equipment and no custodial personal assistance). Many people, matter-of-factly, simply did expect any health care plan to provide what they really need.

Another major finding is the clear expression of the need for reliable and valid information upon which to base their decision to subscribe or enroll in a given health care plan. For focus group participants, reliable and valid information meant information based on the experiences of people like themselves. At the same time, other sources of information, including professional assessments of quality of care, were welcomed and often highly valued, as long as this information is consumed in conjunction with the real life experiences of one's peers.

Expert feedback also emphasized the need for reliable and valid information, and just how difficult it is to achieve. Our experts seemed to be telling us that many informational products and services including popular guidebooks, consumer ratings, and other services have poor reliability and questionable credibility. We should be care to develop valid and reliable measures of quality of care, administer them with the same rigor that a well-designed consumer survey is administered, use consistent decision rules in the analysis of the data, and control for different levels of health care utilization and other factors.

SUMMARY AND IMPLICATIONS OF PRODUCT DEVELOPMENT RESULTS

During Phase I, the project team designed and develop one "low tech" and one "high tech" component of a decision support system to help people with physical disabilities choose health care plans. The "low tech" product is a complete guidebook consisting of questions and answers about choosing health care plans, worksheets, a glossary of important terms, and a resource guide. The 'high tech" product is an interactive CD-ROM program consisting of text, narration, videos, a radio program, and self-assessment exercises.

Although the guidebook and CD-ROM are not flawless, we feel that they are substantially valuable and practical contributions to the goal of enhancing consumer among people with disabilities. We have demonstrated that useful "low-tech" and "high tech" products can be developed with limited resources that not only respond to the information needs of people with disabilities as articulated by our focus group participants, but also can be prepared in engaging and interactive formats. For these reasons, we have met or exceeded every objective and goal of this Phase I project.

Authors:
Stuart P. Hanson, Berkeley Planning Associates
Quentin W. Smith, The Institute for Rehabilitation and Research
David J. Simon, Menlo Park

Project Team
Stuart P. Hanson, Principal Investigator
Quentin W. Smith, Co-Principal Investigator
David J. Simon, Multimedia Consultant

Berkeley Planning Associates
Ann Cupolo
Sasha Gottfried
Susan Haight
Dennis Meehan
Pat Spikes-Calvin

The Institute for Rehabilitation and Research
Lex Frieden
Joyce Frieden
Kim King
Laurie Redd
Jonathan Strayer, MD.

Consultants
Lawrence H Boyd, Ph.D.
Gerben DeJong, Ph.D.
Jan Hecht, Ph.D.
Maureen Donahoe
Robert Mudd

Many people contributed to this project. Foremost were those people who attended our focus groups in Oakland and California. Belying the belief that the "only thing focus group participants share is a desperate need for $25," our participants freely shared their experiences and worked hard to analyze their underlying preferences for health care. We would also like to thank Nancy Ferreyra in Oakland and Joyce Frieden in Houston for their help in recruiting focus group participants. Last but not least, we would like to thank Maureen Donahoe and Robert Mudd for volunteering to share their thoughts about choosing a health care plan.

This project has been funded, at least in part, with federal funds from the Agency for Health Care Policy and Research, Public Health Service, Department of Health and Human Services under Contract No. 282-94-2032. The contents of this publication do not necessarily reflect the views of the Department of Health and Human Services, nor does mention of trade names, commercial products, organizations imply endorsement by the U.S. government.

A HEALTH CARE PLAN DECISION SUPPORT SYSTEM FOR PEOPLE WITH DISABILITIES
FINAL REPORT
Submitted by:
Berkeley Planning Associates
440 Grand Avenue, Suite 500
Oakland, CA 94610

Submitted to:
Agency for Health Care Policy and Research
2101 East Jefferson Street
Rockville, MD 20852

Contract Number 282-94-2032
Frantz Wilson