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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.
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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:
governing body
