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CHAPTER IV CONSUMER PARTICIPATION This chapter reports the results of the committee's study of con- sumer participation in health planning. First, the history of the consumer participation requirements is given, with data on its current status. Problems identified in testimony and from the committee's research are listed. Finally, the committee's conclusions and recom- mendations are summarized. History and Background An important characteristic of the health planning program is consumer participation. Health Systems Agencies (HSAs) must have a governing board with a consumer majority and specified numbers and types of health care providers and public officials. Subcommittees and sub-area councils also mast have a consumer majority.* It is assumed that the inclusion of consumer values and prefer- ences in the planning process provides a client perspective on deci- sions that affect their lives. Consumer needs and preferences are not always different from those of providers and planners, although each sometimes resists sharing decision-making power. All interests should be fully and fairly represented in deliberations and adequate attention should be given to social and technical issues. This re- quires a well-balanced governing body with strong and confident members representing different views. *As a group, consumers on the boards are to reflect the demographic structure of the health service area (by income, sex, age, ethnic, racial, and linguistic groups) and represent the handicapped, major purchasers of care (including labor unions)' and areas of different population density. —53-
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-54- The 1974 planning law defines "consumers" as citizens who are not providers of health services or do not have a policy making or fiduciary role in a health institution. Spouses, children, and parents of providers cannot be counted as "consumers." Neither can anyone whose income from occupations related to the provision of health care (such as drug manufacturer, hospital supplies, or re- search) exceeds one-fifth of total income. Thus most people who have knowledge of the health industry are excluded from participating in planning as a consumer representative. Some feel this has weakened the planning agencies. This is discussed in detail in Volume II of this study. The committee examined data from all 204 HSAs and found that consumers make up 52.5 percent of present governing body members (see Table II). The average size of a governing body is 44, ranging from 15 to 137, and the average size of executive committees is 20, ranging from 6 to 30. Large governing bodies pose difficulties in reaching decisions, governing the agency, and providing adequate staff support. However a large board provides an HSA the flexibility to accommodate pressures for expanded representation. Sixty-one percent of the agencies use sub-area advisory councils to further localize planning and expand opportunities for increased public involvement. Many agencies reported extensive efforts (beyond compliance re- quirements) to inform and involve the general public in the health planning process, presumably illustrating a genuine commitment to this activity as well as a desire to develop good will and credibility. Eighty-four percent of HSAs prepare and distribute newsletters report- ing agency activities and current health issues, fifty percent main- tain an extensive nailing list for distribution of newsletters and other agency documents. Sixty-seven percent have established a speakers bureau or scheduled presentations, and seventy-four percent reported cultivation of media relationships as an ongoing activity to enhance media cooperation and coverage of agency activities. The health planning program was designed to help in educating the public about selective health matters and serves to introduce some relatively new participants as advisors to health services decision- makers. One of the important achievements of the planning network has been the formal, structured addition of consumers to the world of health policy. To require that agency governing boards be controlled by a con- sumer group was controversial in 1974. Although more widely accepted now, the notion that other than health professionals should have a major voice in decisions about the supply of health resources is still questioned. The consumer participation requirements are experimental, partly because comparatively little is known about effective citizen
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-55- Table II. Consumers on the Governing Bodies of 204 Health Systems Agencies Number Total Number of Governing Body Members 8,969 Number of Consumers 4'705 (52e 5%) Number of Vacancies 137 ~ 1.5%) Total Potential Consumer Positions 4'842 (54~0%) Selected Characteristics Population* SEX: - Females 2,041 (43%) (52%) T4ales 2 ~ 664 (57%) (48%) AGE: 18-34 797 (17%) (29Zo) 65+ 729 ~ 15% ~ ~ 11% INCOME: Less than $10,000 693 (15%) (24%) $10~000 ~ $24~999 2~137 (45%) (48%) $25 '000 and over 1, 605 (34% ) (29% ) Data not provided 59 ~ 1% Income categories changed 211 ~ 5%) RACE: Black 695 ~ 15% ~ ~ 12% ~ White 3,743 (80%) (86%) Other - includes Hispanics 267 ~ 5%) ~ 2%) LANGUAGE: English 4,539 (96%) (96%) Spanish 133 ~ 3%) ~ 2%) Other 33 ~ 1%) ~ 27) Source: Data were collected from 1980 Health Systems Agencies' appli- cations for funding and designation. *U.S. population figures on sex, age, and race are from, U.S. Depart- ment of Commerce, Bureau of the Census, Current Population Reports, Series P-25, No. 870, January 1980. **U.S. population figures on income are from, U.S. Department of Com- merce, Bureau of the Census, Current Population Reports, Series P-60, No. 123, June 1980. ***U.S. population figures on language are from U.~. Department of Com- merce, Bureau of the Census, Current Population Reports, Series P-23, No. 60, July 1976.
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-56- involvement in planning bodies, and partly because even less is known about ensuring strong participation by the poor, minorities, and other groups needing special help to ensure that their perspectives affect decision making. No organized consumer groups were putting pressure on Congress in 1974 (Caper, 1980), but consumer activist organizations quickly devel- oped as the health planning law was implemented. Public interest organizations became involved as they saw opportunities for strengthen- ing consumerism in health through health planning (see Checkoway, Volume II). The 1974 law was very detailed, but the consumer portion said little about board selection processes. One official said this was because Congress assumed that agencies could not function or be designated without broad based community support, so agencies would work to ensure that support (Rubel, 1980~. The value of broad support is explained in the House Report on the 1974 legislation. Without credibility in the community and close working relationships with those who operate the health system, guided change will be impossible. The credi- bility and ability to seek change through influence and the seeking of assistance can be obtained in part through the representation on the governing body of the HSA of the community's change agents and power structure. Thus, while a governing body should accurately represent the community's consumers of health care, including the poor, the rural, and minorities so that their needs will be reflected in the agency's plans, the governing body should also include representation of newspaper editors, judges, bankers, third party payers, industry health professional schools and others who, once the plans are drawn up, can assist the agency in implementing them. (U.S. Congress, 1974.) It was hoped that the consumers' numerical superiority would balance the more concentrated interests, and greater resources 9 information and skills of the providers. It was hoped that inclusion of those prone to criticize the program, especially practicing physicians, would en- sure that they would not create problems. Rationale for Consumer Participation The 1974 law was written in a way that mixes issues of account- ability, participation and representation.* An underlying assumption was that consumers can, and should, voice the opinions of "the average *These are covered in detail by Morone in Volume II of this study.
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-57- citizen" and special consumer concerns. The consumer board member group is to "mirror" the community in order to represent the public and to make fair, publicly acceptable, and credible decisions. There are a number of problems with this concept. There is, for example, no direct accountability to the public or constituent groups. HSAs mainly are accountable to federal project officers many layers down in the bureaucracy. Yet to be effective, USAs must have community credibility and acceptance. They are often strained by the pull of at least two masters. (Berger, 1980) The law's stipulation of governing board representation reflects a belief that the public interest will be served if all affected par- ties reach decisions and resolve differences through compromise. The law spells out which major demographic groups will be represented on the Doard, and precisely which providers must be included. Society is assumed to be composed of groups defined by shared economic, cul- tural, ethnic, and geographic interests, and that those are the legit- imate interests in public policy formation. (Low), 1964) There are conceptual and operational difficulties with this model, particularly the questions it raises about who represents the public and how the public interest is served. (Vladeck, 1977) One of the conceptual complications of this program is that con- sumers are expected to speak for their constituency with virtually no way of knowing its desires. As can be seen in legislatures and in labor negotiations, individuals speaking for groups of people seldom get complete accord with all other individuals in the group. The law's stated assumptions about consumer participation were contrary to evidence concerning consumer or citizen participation. A hope that the problem of consumer participation was not structural rested on a belief that mediocre participation was caused by impedi- ments and poor administration. If those were struck down and unenthu- siastic implementation corrected, consumers would then participate as effectively and as actively as, for example, the providers. The "theory of concentrated interests" suggests that providers are active and "effective" on boards because their livelihoods and other profes- sional rewards are directly involved. When one's interests are so clearly at stake, sustained effort is much more likely to take place. (McConnell, 1967) Consumer advocates contended that their problems in representation and participation would be corrected by encouraging involvement of consumers with interests more directly tied to concerns about chronic disease or other special health problems. Selection of consumers by constituency groups tends to increase the individual consumer's sense of independence, confidence, and contribution to the planning process, and creates the advantages of "concentrated interests."
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-58- Governing Body Selection The 1974 Act was silent on selection procedures for board members and vague on the meaning of "broadly representative." By December, 1977, the planning Act was the subject of five lawsuits on the issue of consumer representation. In one of the most famous cases, Texas ACORN, the plaintiffs argued there were not enough poor consumers on the board and that, if people with higher incomes were supposed to represent lower income consumers, the burden of proof was on the Health Systems Agency to indicate how the higher income board members would do it. The District Court of Appeals went further, requiring that DUES demonstrate precisely how board members were representative of low- income or other demographically representative populations. This drew new attention to the selection process supposed to achieve substantive representation of demographic groups and groups concerned with spe- cific diseases such as the American Cancer Society. It became evi- dent that selection of HSA board members by organizations or groups outside the planning agencies was more likely to produce active representatives. (Marmor and Morone, 1980) For example, the NAACP may now select an individual to represent blacks in the area. The board member is held accountable to the association, has a greater reason for involvement, and has access to a body of opinion, advice, resources, and staff to help do a more effective job. Consumer groups, including the Public Citizen Health Research Group, the National Health Law Program, Georgia Legal Services, and the Consumer Coalition for Health, testified at various trials to many problems in the implementation of the consumer representation requirements. Witnesses documented instances of procedural gerry- mandering, "elitist" self-selection, conflicts of interest, poor management, especially in relation to consumers, and violation of both the letter and the spirit of the law in some agencies. Although the number of documented cases was small, there was sufficient evi- dence of the need for more legislation and for pressure on DINS to monitor the situation more closely. (Fenerty, 1978; Georgia Legal Services, 1978) The main consumer complaints concerned HSA board composition and representation, process of selecting its members, and technical support for consumer representatives. The composition and represent- ation question had been the subject of debate since 1974. The last two complaints were heard most often in the 1978 Congressional hear- ings and in other recommendations from consumer groups and informed observers that preceded the 1979 Amendments to the planning law.
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-59- The 1979 Amendments Odds had interpreted the 1974 Act to call for a consumer majority selected almost by a quota system. The 1979 version was changed to read: The governing body must have a majority of con- sumers...who are broadly representative of the health service area and shall include individuals representing the principal social, economic, linguistic, handicapped, and racial populations and geographic areas of the health service area and major purchasers of health care (including labor organizations and business corporations) in the area. (Author's underlining.) Perhaps most important in congressional hearings were challenges to the selection of USA governing body members. The 1974 law was silent on the question, and the boards were, in almost all cases, originally "self-selected." Planning agencies, mostly private and non-profit, incorporated themselves and applied to DHHS to be desig- nated. Critics argued that, no matter how well-intentiorled, self- selection at best ran the risk of in-group elitism and a constricted view of the community, and at worst, maintained control over decision making by those already in positions of influence. The 1979 Amendments required a more open process for the selection of governing body members, requiring (1) that half of the members be selected by other methods or people outside the existing governing body, (2) that compositional requirements be met, (3) that there be opportunity for broad community participation in selection, and (4) that community participation be encouraged and facilitated. Because of the organiztional diversity of HSAs, the Congress persisted in not prescribing a particular method of board selection. It was hoped that the provisions of the Amendments would ensure greater accountability to the public at large as well as to the constituent organization or group represented by an individual.* The 1979 Amendments also required a program of staff support and education for governing body members. There now has to be at least one agency staff member with responsibility for assuring that governing body members, especially consumers, get information and technical assistance. Staff support was authorized on the assumption that consumer participation would be hampered by lack of health services expertise. Although consumers are seen as having a special *The House report for the proposed 1978 Amendments had some sugges- tions for methods including appointment by organizations, or elected officials, selection by sub-area council, selection by a membership corporation; direct election. This part was eliminated in 1979.
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-6Q- contribution to make to the HSA because of their awareness of com- munity needs and interests, the theme of the consumer as technically handicapped frequently recurs in health planning literature. The assignment of one staff person with consumer support responsibility is expected to improve the situation. For more discussion on this question, see Checkoway, Ellenburg, and Morone in Volume II. The 1974 statute had permitted reimbursement for reasonable costs incurred in attending meetings, and the report made clear that the purpose was to ensure participation of the economically disadvantaged. The 1979 Amendments added the possibility of members receiving an advance for expenses, particularly important for low-income citizens. Two specific interests were newly identified in 1979 as requiring representatives--the handicapped and mental health interests. Mental health can be represented by either a consumer or provider. Another modification in the USA governing board was in the definition of a provider. Under the original Act, a consumer represent ative who had been an employee or board member of a health center' hospital, or the like could not be a consumer representative on the board for at least twelve months. The Amendments removed the twelve- month exclusion, which had been a particular problem in sparsely settled areas and small towns.* The 1979 Amendments, which added purchasers to the definition of consumers, stated that they included, but were not limited to, unions and corporations. This was believed to be one method of strengthening the hands of consumers because purchasers are assumed to be knowledge- able about planning and have a vested interest in the outcome. Of unknown effect is a 1979 provision that government representatives can be either consumers or providers. The legislative history of the 1979 Amendments made suggestions for movement from the theoretically and operationally weak notion of descriptive representation (as discussed by Morone in Volume II of this study) toward a more practical concept of formal representation. The 1979 Amendments opened up the selection process, and strengthened the consumers' access to agency resources. Yet there remain a number of questions concerning consumer participation and how it might be made more effective. The balance of this chapter reports on the committee's findings and observations and concludes with its recommendations. *There still is no precise policy on this question. Consumer members of hospital boards of trustees can be consumers for RSA purposes.
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-61- Current Issues in Consumer Participation The study committee held public hearings, commissioned several papers based on case studies, and collected data from the 1980 USA applications for funding and designation. The problems revealed by these efforts are discussed in the several pages following. Ambiguity of the Consumer's Role Ambiguity of the consumer's role complicates evaluation of con- sumer participation. If it is perceived as a value and an end in itself, an evaluation would consist primarily of determining the number of participants and the frequency and intensity of their in- volvement. However, if participation is perceived as contributing to the attainment of explicitly stated goals, then an assessment of their effectiveness in terms of the particular goals needs to be undertaken. (Fullerton, 1978; Marmor and Morose, 1980; Metsch and Veney, 1976; Rosenbaum, 1978; Rosener' 1978) Whatever their intended purpose on HSA boards, consumers feel a disparity of role definition compared with providers. Many con- sumer groups argued that consumers act in isolation, without a well- defined constituency, and without a clear perception of what they can hope to accomplish through their participatory efforts. (Chavkin, 1980; Feinson, 1980; Paap, 1978) diversity of Opinion on Objectives The objectives of consumer participation in health planning often are expressed as promoting provider responsiveness to the users of health care services; increasing consumer satisfaction, shaping changes in the health care system; improving the health status of the population, increasing efficiency and utiliation of services, and the like (Koseki and Hayakawa, 1979~. Yet the planning legisla- tion defines consumers primarily by demogrpahic characteristics and leaves unclear what the role of consumers is to be. Several observers have said that participation is a complex political notion, and there are more realistic ways to promote public participation than the methods mandated in the health planning legislation (Consumer Commis- sion on the Accreditaiton of Health Services, Inc., 1978; Fullarton, 1978; Koseki and Hayakawa, 1979; Marmor and Morone, 1980; ~letsch and Veney, 1976~. The vague statutory language concerning the objectives of consumer participation encourages a wide range of views as to what constitutes an effective consumer or effective consumer participation. Many consumer advocates describe effective consumers as speaking for the groups that provide them with organizational support and direction (Feinson, 1980; Knox, 1978; Harbor and ilorone, 1980; Paap, 1978; Shannon, 1980), yet
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-62- there is no consensus that an effective consumer member must have ~ constituency. '1owever, there is agreement that effective participation requires that consumer values, preferences, needs, and perspectives substantially influence health planning. The federal Oovern~nent's definition of consumer effectiveness probably would reflect a desire that consumers decrease the rate of growth in health care costs. Consumer representatives are asked to assist in cost control on the assumption they will reap some bene- fits. However, planning cannot guarantee that costs saved in one area (e.v., hospital utilization) will be available for other services. Maybe the provision of new and different services in one section of the system are dependent on controlling costs in other sections, but cost control may instead mean that the money saved will be spent out- side the health sector. Some, including one consumer group, have argued that no one and certainly not consumers by themselves, can effectively control costs in a health care system that has an economic base of fee- for-service reimbursement, private fiscal intermediaries, provider- controlled systems of accreditation, licensure, and quality control, and strong incentives for bringing more programs and services to local communities. Lost of these influential factors are not under the control of planning agencies. Others argue that providers would regard as effective those con- sumers who share provider values and support their decisions. Providers are most likely to resist demands for altering the present health care delivery system, and historically have mobilized political and economic support to lobby for their interests (Colt, 1970; Lipsky and Lounds, 1976; Detach and Veney, 1976~. Lack of Accountability and Appropriate Selection Processes The health planning le~islation's failure to provide for direct accountability of TISA governing board members is complicated by the differing definition of representation when applied to providers and consumers. A socially descriptive definition of representation is applied to consumers, but providers represent a group of specific health interests. It has been argued that consumers should be selected by specific constituent organizations so they can be monitored and replaced if they are not adequately representing the interests of their constituency. r-Iowever, Public Citizen health Research Croup (~) charged that in many areas there are inadequate consumer organizations from which to draw representatives. To compensate for this, the 'lealth Research Group asserts that O'lrIS and the riSAs should be developing and funding consumer groups to feed into the planning process. Twenty-ei~ht percent of the agencies have provisions for the direct appointment of representatives by sources beyond the existing
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-63- membership of the agency. dowever, few agencies surveyed (only 0.5 percent) annually asked constituent organizations to recertify that their appointee still represented their interests and thus remained "accountable." Fourteen percent of the agencies permit all governing body members to be directly appointed by local governmental authorities after appropriate solicitation of nominations from a broad range of sources. Such a process was regarded dubiously by one consumer group, which contended that local political systems have caused or perpetuated many of the difficulites in obtaining health care experienced by low- income persons. Selection is inextricably linked to the problem of accountability, but timing was such that when the 1980 grant applications were being prepared* a majority of HSAs (more than 51 percent) had not revised their selection processes to conform to the recent non self-perpetuating man- date. Training Programs to Strengthen Consumers The image of consumers as a weak voice in planning has resulted in training programs to give them more of the information that pro- viders and planners have. Instead of teaching consumers to apply their own values effectively, the programs try to train them in tech- nical planning. Some argue that a value approach is stronger and more realistic than a technical approach. Although the majority of RSAs have begun to implement the recent legislative provisions that require an identifiable support program for board members, only 14 percent of applications specifically mentioned an emphasis on consumers. Training programs for consumers have been limited by inadequate resources (i.e., money, time, and materials). Consumer activists *A review of all 1980 HSA grant applications revealed no uniform election process. (By November 1980 only 19 percent of HSAs had selection processes approved by the Bureau of Health Planning.) The selection processes may be described in the following manner. Often a nominating committee identified vacancies, defined the categories of membership required to maintain representational compliance, and solicited (through the media or from a file of potential members) nominations from a variety of sources. Upon receipt of the nomina- tions, a matrix designating the appropriate category for each nominee was prepared, and a slate of nominees along with the nominating committee's recommendations was forwarded to the governing body for their election. When more than one interested organization wished to represent a membership category, a cluster group of related organiza- tions was established to select a representative. Fourteen percent of the USAs permitted all members to be directly appointed by public elected officials, and 2 percent reported election processes conducted by mail.
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-64- mentioned the lack of traininO resources at the consumers' dis?osal (i.e., special funds, staff, time, etc.) as contributing to consumers' inability to sustain their work as community representatives. On the other hand, others noted that many providers need training in issues in the consumers' bailiwick, and other fields, particularly innovative methods of health service delivery and financing. All agree that it is important that information be provided in a concise and manageable form for everyone's sake. Sources of Tension and Costs of Consumer Participation Consumer tension arises because of their ambiguous roles. Con- sumer representatives feel powerless because insufficient technical and financial resources are devoted to making them effective partici- pants. In order to be effective, consumer representatives must expend time, effort, and money. Time and effort must be devoted to a) attend- ing meetings, hearings, and workshops, b) responding to questionnaires and being interviewed, c) writing letters to officials, securing information about issues, digesting materials provided by agency staff, and participating in advisory bodies. Monetary costs arise in time lost from a job, travel, child care, telephone calls, and similar matters, all of which pose special hardships for low-income, elderly, and handicapped consumers. There are also the psychological costs of frustration, slow movement of even the smoothest planning process, and the lag in time between effort and results. As the costs rise, so does the number of citizens excluded from participation or unwilling to par- ticipate. The term "burn out" is used often to describe board members and staff members' feelings about their efforts and their frustrations, especially when the federal government applies new requirements without understanding, sympathy or appreciation, at least as it is viewed from the field. Findings and Recommendations Consumer Participation The committee found that the health planning program is an enter- prise aimed, among other goals, at more broadly distributing political power for advising on an area's health resources. TIealth planning attempts to remove decision making from provider domination and give the public more influence. By specifically naming certain types of consumers to be represented, the planning Act invited particiption by groups historically ill-served by the health system. The committee concludes that an important contribution of the program is the addition to the advisory process of consumers, particularly those who represent the traditionally underserved and underrepresented.
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-65- The consumer role will become even more important as fiscal problems lead to the need for decisions about what '~ill be supported or not. Reductions in services are not likely to fall evenly on all citizens. Planning agencies can gather information, expose inequities, and help the public understand the ion:, term social and economic con- sequences of cutbacks in services. It is unlikely that in times of rapid inflation and cutbacks in almost all services that low-income and minority citizens, who are frequently politically powerless, will have many opportunities for ensuring that their needs have high priority. The health planning agencies can make a special effort to find new, imaginative ways to adapt resources to provide services that are needed but not available. These should include, but not be limited to, serving the aged, child- ren, and the Reinstitutionalized mentally ill and mentally retarded. The committee found the role of consumers in planning agencies to be ambiguous. A major source of ambiguity is that it is not clear whether consumers should "mirror" the community as a whole, and, as a consequence, speak for it, or represent particular constituencies. In practice there is a mixture of such models of representation. Few con- sumers formally represent constituency groups, but many providers do. The legislative history of the 1979 Amendments suggests a model of board composition that somewhat moves away from the mirror view embodied in the 1974 Act and toward more connections to interest groups. The concept of a consumer majority in health planning and plan- ning as an arena for multiple interest bargaining are widely accepted. But questions will continue to arise about which interests are to be represented, who will speak for those interests, and how the individu- als are selected and held accountable. Many perceive consumers and providers as natural enemies, with the USA an arena for combat. Others fear the possible loss of the originally conceived structure in which citizens and professionals could plan for health services in a cooperative manner. Those who view the ISA as a carefully structured locus for adver- sarial interchange and achievement of hard~fought compromise are concerned that the consumers have sufficient assistance to offset the providers' advantages of resources and expertise. There will continue to be demands for staff, special training, and networks of information for consumers.
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-66- There are some who would like an all-consumer board, with pro- viders serving as technical advisers,* but this idea is far different from that institutionalized in 1974, which sought to balance consumer and provider interests. There are advantages to having consumers selected by, and responsi- ble to, constituency or interest groups. There is evidence that repre- sentatives of groups are more effective participants in the planning program, and it is in the interest of the program to have confident and active consumers. But the committee saw both advantages and disadvantages to a pluralist, interest group bargaining model. For example, while parti- cipation and accountability are enhanced, heightened conflict may weaken the ability of the board to find cooperative solutions to problems. Of particular concern to this committee is how the public interest is represented in the process. The committee discussed several approaches, including one that many agencies now use, in which some proportion of the consumers are selected by and represent different organizations and interests, and others are elected or appointed "at large" or by public officials. The committee found that there are solid arguments for not making radical changes in methods of governing body selection and composition. Many of the planning agencies already are engaged in altering those procedures to conform with the 1979 Amendments. The agencies need time to regroup and build their capabilities. Further changes should be avoided until experience has been gathered on the 1979 changes. The results of the changed requirements have created a nation full of natural experiments with substantial diversity which can be used to impove our understanding of the factors that encourage effective consumer participation. The committee recommends that the Health Resources Administration take advantage of the diversity in the nation to evaluate different approaches to board selection, composition, and . methods of fostering active participation. It will be particularly important that such evaluations be academically defensible to ensure that changes considered in 1982 be based on solid data. The committee does not think that a requirement for more formal links with constituency groups are currently warranted. Existing groups can be used to informally strengthen citizen involvement and under- standing of health planning. The attributes of clearly defined consti- tuencies, experience in organizational politics, and resources can be used by individual 'board members. *The British have advisory community health councils composed of citi- zens, with the possibility of a doctor being the citizen representa- tive if selected to speak for a group of consumers.
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-67- The task at hand is to overcome political imbalance within the RSA governing body to ensure that planning agencies satisfactorily address a wide range of community concerns. If this goal is achieved, board composition becomes less important. Questions concerning the pur- poses of participation arise anew. Is the participation of consumers so highly valued that when agencies face budget cuts the costs of consumer participation are still justifiable? More questions about the aims of the 1974 legislation and its citizen participation model will arise with each significant modifica- tion in ther program. The expectation that the HSA governing body would include individuals able to initiate change and members of the community's power structure to ensure implementation of planning decisions has receded. Instead, the governing bodies are often viewed as an arena for competing interests to resolve differences. The governing board model of today is still a mirror view, but with consumers strengthened by connections with organizations with certain special interests represented. This is different from the previous concept of a mixture of providers and non-provider citizens, including some of the community's leaders and change agents. Whether or not this shift will make the planning program less connected to the loci of power, and thus less influential, is not clear. There are advantages to having a highly public advisory process in which all of the key interests and perspectives in health matters must operate. flaking public both technical issues and questions of value and judgement ensures the negotiations in the public interest. The committee recommends against changes in the selection and composition of governing bodies at this time. The committee did not find any demonstrably better approach to enhancing consumer participa- tion, but it uncovered some approaches to reduce impediments to more effective citizen activism. The committee recommends that the DHHS identify and disseminate methods for enhancing participation in HSA governance, especially by consumers. Methods described in Volume II by Checkoway and Morone should be circulated widely. Good examples that might be cited as models include the Northern Virginia HSA and the West Bay HSA. Education should not be limited to consumers. Providers also need to learn about innovative and alternative service delivery, the importance of health promotion and disease prevention, consumer values, health economics, and the application of epidemiology to health plan- ning. Training should cover many of these matters, as well as methods of decision making, leadership, and conflict resolution that can be employed by governing boards. The Health Resources Administration should explore possibilities for enhancing consumer participation. For example, caucus-like
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-68- activities might be fostered to give consumers the kind of psychologi- cal support that other board members get from their profess~onal, peer, and occupational roles. Consumers might establish the agenda for their own training. But attention to consumers should not detract from the importance of a combination of providers and consumers on the boards, and the support that providers can and do give to consumers. As Checkoway noted (Volume II): "providers were sometimes more outspoken than their consumer counterparts in favor of consumer interests." The function of the consumer as spokesperson for certain values and points of view is important. Consumers often will not want to become "technical" planners. Rather they will wish to maintain the primacy of their values and opinions in a complicated technical and political process. They will sometimes need more technical information to effectively interject their values into the process, and there should be reasonable availability of technical support when they want it. The committee debated whether or not consumer board members should be paid for their participation. Providers, professionals, and public officials often participate as part of their jobs or related to their professional/career interests. Many of the problems of con- sumer participation might be reduced if citizens were paid for some documented preparation time and for attendance at governing body meetings and public hearings. The committee recognizes certain advantages to reimbursement for participation, but does not feel that a recommendation in favor of that idea is appropriate at this time. First, payment only to lower income members would require a "means test," which was unacceptable to everyone on the committee. Second, the program's voluntary nature is considered important. Third, the costs would be enormous, and could absorb a major part of the budget of some agencies. The committee also discussed a possible recommendation that con- sumers have their own staff to counterbalance the advantages of providers and their board members. In general the committee concludes that it needs to know much more about the dynamics of the staff support issue. The committee applauded the changes made by the 1979 Amendments and suggestions in the legislative history aimed at strengthening consumers through staff support. It is evident that consumers seem to be more effective when they have developed good relationships with staff. Governing bodies should recognize the importance of this support and make certain that board and staff relationships are appropriately structured and in particular, that consumers feel confident in their roles. But the committee also noted the divisive potential of having separate staff members reporting to the consumers only. In general, the USA board
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-59- should clearly understand its policy making role and its "supervisory" relationship to the executive director who serves at its pleasure. Staff must bear in mind their position (under the authority of the ex- ecutive director) as staff to the governing body. Consumers need to understand that as majority members of the governing bodies, they are supposed to be in a strong position, particularly in setting policy and determining the overall agency management style through hiring and control of the executive director. Difficulties with the nature and quality of staff support should be worked out with the director. To develop assistance for consumer representatives' the board can authorize special funds for use by consumers. Such funds could be used to hire experts, conduct research, organize meetings, and consult with local consumer and professional interests, obtain administrative and support services, and the like. These recommendations draw on mixed evidence concerning consumer participation. In Volume II' Morone, Checkoway, and others report strength and toughness among some consumers and more division among providers than was anticipated. Much of the difference between theory and the evidence might be attributable to an underestimation of the role of staff. Morone found, for example, that staff served "to balance the concentrated stakes of provider representatives." Checkoway, too, highlighted the pivotal role of staff attitudes in facilitating consumer involvement. It is particularly interesting that Checkoway, among others' notes a growing capacity and increasing number of citizens who understand health issues and are actively trying to achieve their goals. The committee also discussed the possibility of recommending re- quirements for more insurers and third party payers on governing bodies. Some of the committee felt strongly that third party payers, insurers, and other major health services purchasers should play major roles in health planning. Others felt equally strongly that more formal involvement of insurers, third party payers and purchasers would be a mistal`:e. The base for opinion and judgment was inadequate for the committee to take a stand, although Sapolsky in Volume II takes a clear position on that topic. To conclude, the committee decided that there was ~ need for experiments and rigorously designed studies to learn about factors that contribute to effective consumer participation. There is ample opinion and speculation, but the knowledge base is flabby and mixed. Chapter III discusses the importance of administrative flexibility to allow experiments to be undertaken. The committee concludes that the area of consumer participation needs systematic study and attention and the Health Resources Adminis- tration should help foster such experiments.
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-70- Locations in which there are stron~ links between planning deci signs and third party payment should be studied. Locations where the board includes a larger proportion of payers, insurers or purchasers should also be studied to see whether or not there are differences in the effectiveness of these agencies.
Representative terms from entire chapter: