LHealth Planning
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Consumer
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Health Planning:
An Annotated
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U.S. DEPARTMENT OF
HEALTH, EDUCATION,
AND WELFARE

Public Health Service
Health Resources Administration

 

Consumer
Participation
in Health
Planning:

An Annotated
Bibliography

November 1976

U.S. DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE
Public Health Service

Health Resources Administration

Bureau of Health Planning and Resources Development
Division of Planning Methods and Technology

National Health Planning Information Center

DHEW Publication No. (HRA) 77-14551

HRP-0 300201

L146 2%4605

ay ”$7185

FOREWORD

Consumer participation in health planning has high priority in
the administration of the National Health Planning and Resources
Development Act of 1974 (P.L. 93-641). It has been the topic of many
discussions and research endeavors. The purposes of the selected
bibliography are to provide an overview of the diversity of available
material in the area of consumer participation in health planning and
to serve as a springboard to the literature for those with more specific
areas of interest within this subject. It is intended to be a reference
guide to health planners, educators, and the general public who are
concerned with consumer representation and participation in the health
planning process.

This bibliography was prepared by Jean Doong under the academic
guidance of Dr. Philip N. Reeves. The resources and data bases of
the National Health Planning Information Center, the Parklawn Health
Library, and the National Technical Information Service were utilized.

Comments and questions regarding this bibliography are welcome. Please
direct them to the Division of Planning Methods and Technology, Room 12-34,
5600 Fishers Lane, Rockville, Maryland

of Planning

ods and Technology, BHPRD, HRA

      
 

iii

PREFACE

The bibliography is limited to those publications issued from
January 1970 through February 1976 which are particularly relevant
to consumer participation on hospital and health planning boards,
councils, or committees; and neighborhood health center boards. The
fifty-nine references cited are divided into seven sections: The OEO

Experience, Selection, Role, Outcome, Models, Training, and Training
Materials.

In general, the citations refer to articles published in readily
available professional journals. However, in those cases where the
items refer to monographs or publications with limited availability
the documents can be obtained from the cited publisher or author, or
else from:

(1) National Technical Information Service (NTIS)
5285 Port Royal Road
Springfield, Virginia 22161

(2) Xerox University Microfilms (XUM)

300 N. Zeeb Road
Ann Arbor, Michigan 48106

iv

Section

I1.

II.

IIL.

IV.

VI.

VII.

THE OEO EXPERIENCE

SELECTION

ROLE

OUTCOME

MODELS

TRAINING

TRAINING MATERIALS

TABLE OF CONTENTS

Page

selected articles concerned 1
with issues raised in the

late 1960's with regards to

community board role, consumer
representation and selection

selection of "representative" 9
consumer members

the roles of consumers and 7
providers on boards, their

interaction, and problems

arising from this interface

evaluation of consumer parti- 13
cipation on boards, effects

and impact of this partici-

pation

health care systems models 16
enhancing consumer input,
includes proposed legislation

training of consumers and 21
providers for participation
on health planning boards

manuals or guides to be ' 25
used in training of board
members

 

I. THE OEO EXPERIENCE

Brieland, Donald, "Community Advisory Boards and Maximum Feasible
Participation," American Journal of Public Health, 61(2):292-296,
February 1971.

 

Maximum feasible participation (MFP) as described in OEO guide-,
lines and principles involved in its implementation are examined.
Questions addressed include the selection of community representatives,
the assurance of representativeness and community board role. In this
discussion the validity of MFP is raised. Community boards and other
consensus-seeking groups face three dangers. The first is community
nonresponsiveness. Experiences have indicated that those community
members who are elected or selected as representatives are those who
are available or responsive. However, the two characteristics are not
necessarily compatible. There tends to develop an "elite" core which
perform most activities in the community. A responsive elite is too
narrow a leadership base. Second, there exists the possibility of
co-optation resulting from putting residents in official advisory
status. Representatives can lose touch with the community, whereby
their value (both to the community and the board) would decrease.
Co-optation is related to the third danger -- consensus-seeking
community organizations can become a "window dressing," because co-
optation implies assimilation or a concession to more militant forces
in the community. If MFP is valid and obtainable, residents and
professionals must cooperate to build a broader leadership base, increase
responsiveness, and define policy-making functions of community boards.
(4 references)

Evans, Richard D., "Representational Standards in Comprehensive Health
Planning," American Journal of Public Health, 64(6):549-546, June 1974.

 

The application of Federal and State policies of consumer repre-
sentational standards in seven areawide and ten subarea CHP organizations
are combared. Findings indicate that representational standards put
forth in OEO amendments have not been implemented and that a "consumer
majority" has not become a reality, even at the subarea level. However,
subarea organizations have demonstrated a stronger commitment to a
consumer majority and concerted efforts to obtain a larger disadvantaged
and minority group representation.

(12 references)

Evashwich, Connie J., The Community Participation in Health Movement:
Its Origin and Present Status, Howard University, School of Public
Health, 55 Shattuck St., Boston, Mass. 02115, Jan 24, 1971.

 

 

This article provides an historical background of consumer parti-
cipation in the health field and analyzes its effectiveness in the
overall outcome of health programs. The role of OEO in stimulating
consumer participation in the resolution of community health problems
is examined. In particular, practical, theoretical and philosophical
issues of maximum feasible participation are raised. Since there
exist only a few empirical studies, it is concluded that evaluation of
the outcomes of consumer participation isnecessary so that professionals
and consumers know whether consumer participation has improved health
care services and whether health care is an appropriate area for
extensive community involvement.

(20 references) Availability: Xerox University Microfilms
PC $4.00

Sparer, Gerald; Dines, George B. and Smith, Daniel, "Consumer Parti-
cipation in OEO-Assisted Neighborhood Health Centers," American Journal
of Public Health, (6) :1091-1102, June 1970.

The study analyzed some of the OEO experiences with consumer
involvement in neighborhood health center (NHC) projects. Analysis
examined factors that seemed relevant to the issue of consumer parti-
cipation. Factors discussed include organization of consumer groups,
role of staff, consumer participation and the need for more information
on and understanding of the forces that affect consumer participation.
Onsite appraisals provided the primary data for analysis. (Modified
article abstract).

(5 references)

Stokes, Ann; Banta, David; and Putnam, Samuel, "The Columbia Point
Health Association:Evolution of a Community Board," American Journal
of Public Health, 62(9):1229-1234, September 1972.

Through a case history of the first OEO community health board,
specific issues surrounding the role of the board and the impact
(influence) of the board upon health center services as well as the
limitations of such a board are discussed. The major issue addressed
is control of funds. Authors conclude that as long as an outside
organization (in this case Tufts University) can claim financial
responsibility for the health center, the board does not have control
of funds and therefore cannot truly participate in the decision-making
process. A chronology of events is included in an appendix.

(12 references) -

Veatch, Laurelyn, "Lay Participation in Medical Policy Making I -
Community boards in search of authority," Hastings Center Report,
5(5):23-30, October 1975.

 

A review of the genesis and experiences of community boards of
the Health and Hospitals Corporation (HCC) of New York City reveals
that one of the most significant problems community boards encounter
is access to information. There are several factors contributing
to this difficulty:

(1) volunteer nature of community board work,

(2) lack of communication between the advisory board and those
who have more power,

(3) lack of communication with consumers and the community,

(4) community board's need to fight for, or be given, more power,

(5) community board's need to take advantage of the duality or
multiplicity of lines of authority to form alliances with professionals
holding goals closest to their own.

Acquisition of information can also be alleviated by forming local,
regional or national organizations and changing prevailing opinions
regarding rights of people to open information through legislation
and education. The research methodology included interviews of members
and staff of six community boards, HCC staff members and members of
health activist groups; attendance of board meetings and working in
the office of community relations of HCC.

(7 references)

Partridge, Kay B ., "Community and Professional Participation in
Decision Making at a Health Center," Health Services Reports, 88 (6):
527-534, June-July 1973.

Results of a 21-month study of the relationship between participant
status (professional vs. non-professional) and organizational focus
of this participation (board member vs. advisory council member),
and decision making in one neighborhood center are presented. Data
analyses indicate that board members expressed a higher level of
competency, influence and satisfaction, as well as a higher degree
of consensus within the groups concerning goals of the center and roles
of the board and advisory council. Differences in perceived competence
and influence are related to type of organizational membership, not
to personal status. The board expressed more concern with allocation
of center resources and making decisions on it. Even though a higher
degree of consensus exists among board members, the differences in
areas of concern were not sufficiently explicit to conclude that the
group making more allocative decisions would indicate h igher consensus.
The relative weakness of the council is related to its nebulous mandate

and functions within the center, ineffective group process and problem
solving, and confusion as to who was responsible for the character

and caliber of community participation in the center. The methodology
is not included.

(No references)

Partridge, Kay B. and White, Paul E., "Community and Professional
Participation in Decision Making at a Health Center," Health Services
Reports, 87(4):336-342, April 1972.

Methodology utilized for analyzing the part that community and
professional members of the board and advisory council of one neigh-,
borhood health center played in decision making is presented. The main
focus of the longitudinal study was community participation in allocative
decision making, i.e. decisions on allocation of center resources.

Data on who made decisions and what decisions were made were obtained
from interviews, reports of meetings, notes on meetings by an investigator,
and other written communications. Open-ended questions were used to
elicit members' perception of self-competency and influence, conceptions
of the center's goals and problems facing their respective groups.
Issues discussed at meetings were identified, and then coded according
to several dimensions (e.g., length of discussion, whether or not it

was on the agenda). Six categories were used to code the topics.
Meaningful participation was measured in terms of percentage of topics
concerned with resource allocation that was discussed and the number

and types of decisions made in regards to the allocation. Study results
are not presented. f

(15 references)

II. SELECTION

Block, McGibony and Associates, The Selection and Continuing Education
of CHP Boards and Staffs, "Special Report," (Silver Spring, Md.:
Block, McGibony & Associates, Inc., September 24, 1973).

 

 

Techniques and recommendations concerning selection of CHP staff
and continuing education of staff and board members are discussed.
It is hypothesized that there is an important human factor in compre-
hensive health planning at both the board and staff levels which should
be recognized. Thus, stress is placed on public interest, personal
initiative and all qualities which must be possessed by board and staff
if comprehensive health planning is to realize its potential for improving
the health care system.

Brown, Ray E. et.al., The Citizenry and the Hospital, Durham,
North Carolina: Department of Health Administration, Duke University,
1974.

 

This is a report of the 1973 Forum on Hospital and Health
Affairs which examined issues and positions on citizen input into the
hospital decision making process. Chapters include: "The Hospital
and the Community," by Ray E. Brown, reviews factors which contribute
to the lack of responsiveness by the medical care system to the needs
of the community; "Citizen Participation:A Review of the Issues,"
by Eugene Feingold, discusses issues involving an examination of motives
of those who advocate citizen participation, methods of representation,
and what can be accomplished; "Who Can Speak for the Citizen," by Julian
H. Levi, discusses the problem of selecting proper representatives
who will speak for the citizens in health care matters and who will
simultaneously have an appreciation and understanding of the nature of
their financial complexities.

Galiher, C.G., Needleman, J. and Rolfe, A., "Consumer Participation,"
HSMHA Health Report, 86:99-106, February 1971.

Consumers have always been involved in health care but not in health
planning and decision making. Factors responsible for the growth
towards expanded roles for consumers in health planning are discussed
briefly and suggestions for systematic development of consumer roles
in health planning are made. The experience and training needed for
consumer input into a hospital board, neighborhood health center or
community services committee differ from that needed for advising on
State or national programs and planning. Staff support is of utmost
importance to orienting consumer planning board members and thus to
the quality of consumer participation. Moreover, training needs to be
continuous.

A planned system of selecting the most effective consumer repre-
sentatives is also proposed. The chosen consumers who emerge from a
pool of consumers by the "Chinese box" system would have the most to
contribute to the planning board. The system postulates that each
program or board would have its own selection criteria. Seven requisite
conditions for consumer participation to fulfill its potential are then
spelled out.

(11 references)

Parkum, Kurt H. and Parkum, Virginia C., Voluntary Participation in
Health Planning:A Study of Health Consumer and Provider Participation
in Selected Areas of Pennsylvania, Pennsylvania Department of Public
Health, Harrisburg, Pa., November 1973.

 

 

Three areawide CHP "b" agencies in Pennsylvania were studied to
systematically examine the selection of consumer council and committee
members and their constructive participation in the committee's activi-
ties. This report is divided into six sections. The first describes
in detail the 210 CHP committee members who participated. Then, their
attitudes are dealt with more specifically in the second section. Next,
CHP involvement is focused on from the perspectives of why members
joined, what they did in the committees, and how their participation
changed over a period of one year. The last section summarizes the
findings and conclusions. The methodology, as well as statistical tests,
is included.

(121 references)

Graves, Joann G., "Involvement of Consumers," Hospitals, 44 (19) :46-50,
October 1, 1970.

The selection and orientation of consumers to the Citizens Health
Council of Baltimore, Maryland, suggests guidelines by which consumer
boards can be representative of community interests. The basis for
selection of consumer representatives was an analysis of population
characteristics such as geographic area, race, population density, sex,
age and labor force composition; and a survey of major community organi-
zations from which sixteen were asked to designate consumer delegates.
This method produced delegates broadly representative of the popu-
lation characteristics analyzed.

(6 references)

III. ROLE

Anderson, Donna M. and Kerr, Markay, "Citizen Influence in Health
Service Programs, American Journal of Public Health, 61(2):1518-1523,
August 1971.

Designed to discover the process of consumer participation, the
study consists of three parts: an informal group observation of eight
citizen groups in the Twin Cities area, an opinion poll and a formal
document review as related to the citizen groups. An attempt is made
to determine relationship between various external factors and consumer
participation.

(No references)

Bradbury, Robert C., "Comprehensive Health Planning Board of Directors,"
Health Services Report, 87 (10):905-908, December 1972.

 

Interviews of sixteen provider and eighteen consumer board members
of a midwest CHP governing board reveal differences in perceived goals,
source of information, most influential factor in decision-making,
value of board participation, and needed improvements of the CHP agency.
Providers stated their personal goals in terms of coordinating the
health system, whereas consumer board members desired changes in the
health system. Thus, providers more frequently called for changes in
the operation of the agency while consumers called for changes in the
organization of the CHP agency. Consumers relied on staff for information.
For this group, board participation increased their knowledge of the
health system. However, providers were critical of the information
provided by staff and tended to rely on their own expertise in health
matters. In decision-making providers, again, relied on their expertise
as well as recommendations of other health professionals. On the
other hand, consumers considered the health needs of the community
to be the most influential factor in decision-making.

The research instrument is not included in the article.

Holton, Wilfred E., Tufts University School of Medicine, Boston, Mass.,
Citizen Participation and Interagency Relations and Program
Implications for Community Mental Health Centers, December 1971.

Issues related to citizen participation and interagency relations
in community mental health centers in poverty areas are explored. Based
on community input recommendations are made. Stress is placed on
(1) the desirability of moving toward responsible citizen involvement

in planning, control, and administration of the centers, (2) the
necessity for a central focus of control and administration incor-
porating consumer representation, (3) the use of new career persons
in responsible staff positions, (4) the recognition of the need for
alternative solutions to problems of citizen participation and inter-
agency relations by both professional and lay people. (Modified
NTIS abstract)

Availability: NTIS - PC $7.00 MF $2.25

McNerney, Walter J., "Medicine Faces the Consumer Movement," Prism,
1(6):13-15, 39, September 1973.

This discussion paper draws a relationship between the growth
of consumerism in the health field (defined as involvement in the
financing and delivery of care) and the basic changes in the U.S.
economy and society as a whole. Stress is placed on the necessity
for a balance of power between physicians and consumers.

(No references)

Parkum, Kurt H., Factors Related to Voluntary Participation in Health
Planning, The University of Wisconsin, Madison, Wisconsin, 1973.

 

A stratified random sample of 40% of the total number of volunteers
in three CHP agencies revealed three reasons why people are motivated
to volunteer their services. These reasons are: (1) they felt they
had the ability to make contributions; (2) work was consistent with
their values; (3) participation would contribute to their goals of
increasing their knowledge of improving health services. Strati-
fication was based on the distinction between consumer and provider
status as well as the three agencies. (Ph.D. thesis)

Availability: XUM Doc. #74-492 _ Xerox $10.00 Film reel $4.00

Parkum, Kurt H. and Parkum, Virginia C., Voluntary Participation in
Health Planning: A Study of Health Consumer and Provider Participation
in Selected Areas of Pennsylvania, Pennsylvania Department of Public
Health, Harrisburg, Pa., November 1973.

 

 

 

For a complete annotation see Section II. SELECTION,

Pecarchik, Robert; Ricci, Edmund; and Nelson, Bardin Jr., "Potential
Contribution of Consumers to an Integrated Health Care System,"
Public Health Reports, 91(1):72-76, January-February 1976.

 

The authors present a conceptual framework that will facilitate

consumer input in health planning and health services delivery. This
consumer participation model requires that there are primary experts
(medical professionals) and secondary experts (indirect providers
such as health planners) in the health area. It is the informed
consumer's role to provoke issues between the primary and secondary
layers and then use various techniques to bring the two groups of
health experts to conflict resolution. Such a proposed role for consumers
implies the need for specific educational programs in negotiation,
mediation, management and use of information systems.

(10 references)

Pulver, James A., "A Charette: The Role of the Consumer in Assuring
Quality of Health Care," May 9, 10, 11, 1973, Albuquerque, New Mexico,
Sponsored by Regional Medical Programs in New Mexico, Mountain
States and California.

This document is the product of an invitational task force
convened to produce a document outlining the consumer's role in
assuring quality health care. The charette produced statements re-
garding the role of consumers in improving access to health care,
process of health care, compliance with health care institutions,
continuity of health care, outcome of health care, and overcoming
barriers to health care. In the process of health care, consumer
participation in the planning, identification and implementation of
policy decisions and evaluation of community health services is a means
by which consumers may effect quality outcomes of health care. The
appendices include the welcome and keynote addresses, charette format
and conference evaluation.

Availability: NTIS HRP-0003644/2WW PC $5.00 MF $2.25

Reichert, Betty, "Achieving Community Participation in Health Planning,"
in National Conference on Social Welfare Forum, 1974, p.149-159, 1975.

 

Problems inherent in the new definitions of "health" and "consumer"
participation are discussed, followed by recommendations for professional
support of consumers. Problems arise from (1) the ideology of demo-
cratic participation as it is related to the health area, (2) the
necessary shift from "medical care" to "health care system," (3) the
unequal status and varying levels of preparation of participants, and
(4) the health planning which must be performed in the context of
"future shock." Professionals should assist consumers by helping
them and providers understand the difference between "medical care"
and "health care system," and informing the government of the necessity
for a broad spectrum of people for collective community participation.
(16 references)

Ricci, Edmund, "The Consumer Movement in Health Care," Prepared for
Presentation during the Annual Meeting of the American Sociological
Association, 1974, Montreal, Canada.

The discussion paper reviews the origins and recent developments
of consumer participation in health planning and the provision of
health services. It also describes the Mon Valley (Pennsylvania)
community's experiences with an experimental model for health care
planning and development in the form of the Experimental Health Services
Delivery Systems projects established by the Federal government in
1971 and 1972. Principles related to the effectiveness of consumer
input into the health organizational-professional network are derived
from this experience and are presented in the concluding remarks.

(17 references)

Rogatz, Peter and Rogatz, Marge, "Role for the Consumer," Social
Policy, 1(5):52-56, January-February 1971.

Discussion is centered around the necessity for consumers to
become involved in planning policy decisions and medical education,
and professionals to adopt health service roles such as patient ad-
vocate. Both entail invasion into unfamiliar territory and alterations
in provider and consumer attitudes. Confrontations no doubt will
arise, but again they are requisites of a community responsive compre-
hensive health services system.
(No references)

Rosenfield, Joseph, Focus on Change Health Care Series, Volume II,
"The HMO: Consumers Find a Voice," Irvine, California:Protech
Publishing Co., Inc., 1973.

 

This paper explores the emergence of the HMO as a vehicle for
active consumer participation and influence in health care decisions.
The HMO, as an organized delivery system, has the capability and
incentives to give consumer access to policy and decision making in
the organization and delivery of health services through the many
roles they may adopt. Strong consumer voice would bring the orien-
tation of HMOs to the needs and satisfaction of consumers as a client
and not merely as a patient. The influential roles consumers may
adopt as members or nonmembers of an HMO are discussed along with the
need for consumer education relative to advisory board and board
of director membership.

10

 

"Shroud of Silence is Wearing Thin," Modern Health Care, 5:10,12,
January 1976.

In this opinion paper, existing consumer involvement in health
care and the probability of expanded roles are cited to dispel the
fallacy that consumerism in health is waning. Although these are
more subtle than rampant takeovers, developments such as the rise of
unionism in hospitals, the Patient Bill of Rights, the inclusion of
consumer opinion in the accreditation surveys conducted by JCAH and
proposals to build constructive participation in PSROs are demonstrative
of the increasing influence of consumers.
(No references)

Silver, G.A., "Community Participation and Health Resource Allocation,"
International Journal of Health Services, 3(2):117-131, 1974.

 

The trend away from autonomous professional decision-making in
social issues, including health, is attributable to several factors.
First, there has been dissatisfaction with professional decisions
as managerial control and distance of managers from clients increase
and as distribution of resources continue to be skewed. Second,
there has been growing recognition of the political nature of decision-
making, regardless of professional input. Third, consumer partici-
pation and/or control has positive values for planning and implementation
of health systems. It can offset immobility of large systems, racism,
unwieldy bureaucracies, and class discrimination. These conclusions
were drawn from observations and evidence from other studies.

(Modified author abstract)
(34 references)

Tranquada, Robert E., "Participation of the Poverty Community in
Health Care Planning," Social Science and Medicine, 7:719-728, 1973.

 

Consideration of the involvement of the consumer community in planning
and implementation of health services is an idea that has received
significant emphasis in the U.S. only within the past decade. Several
factors underlie its origins, the primary one being changing social
policy and increased concern in the improvement of the quality of
life of individuals. The author reviews experiences to date with
respect to the identification of "community," the means by which the
community will is expressed, the division of responsibility between
professionals and consumers in planning and implementation and several
critical factors of this interaction. Several problems of cooperative
planning and management are discussed: social and cultural differences
between middle-class professionals and poverty area consumers; and
differing priorities, needs and capabilities. Despite these problems,
stress is placed on the great potential for the inclusion of the consumer

T1

as an active, contributing participant in the health planning process.
(29 references)

Wells, Benjamin B., "Role of the Consumer in Regional Medical Programs,"
American Journal of Public Health, 60(11):2133-2138, November 1970.

Although the Regional Medical Programs were not given a clear
legal mandate to involve consumers in planning and advisory bodies,
consumer interest and consumer participation came to play an important
role in RMPs. The functions and potential functions of consumers in
the development of plans for the health industry with respect to RMPs
are discussed. Even though persons involved with the RMPs arrived
at their concept of the consumer's role through processes quite
different from those which characterized CHP, both experiences indicate
that consumers do have valuable functions, ideals and leadership.

(3 references)

12

IV. OUTCOME

Bellin, L. E.; Kavaler, F.; and Schwarz, A., "Phase One of Consumer
Participation in Policies of 22 Voluntary Hospitals in New York City,"
American Journal of Public Health, 62(10):1370-1378, October 1972.

 

Annual reports of 16 of the 22 hospitals participating in the
Ghetto Medicine Program in New York City were analyzed to determine
outcome of consumer participation on ambulatory services committees.

In addition, on site visits were conducted. It was concluded that consumer
participation on ambulatory services committees accelerated the promul-
gation of changes in these voluntary hospital-based ambulatory care
programs. However, specific changes in operating procedures of a

hospital were not attributable to the exclusive efforts of consumer
committee members. Rather, these changes evolved through a complex
process involving the committees, the hospitals and health departments.

(16 references)

Danaceau, Paul, Consumer Participation in Health Care: How It's Working,
Human Services Institute for Children and Families, Inc., May 1975.

Four case studies were conducted to determine the extent of
consumer involvement in health care planning and delivery. Three out-,
patient community health centers, two urban and one rural, and one compre-
hensive health planning "b" agency were selected as study sites. In
all four programs, there were no significant differences of opinion
with respect to primary goals and objectives between consumer represen-
tatives and health professionals. Each program is defined in terms of
structure, participation, characteristics, training, patterns of
involvement, and evaluation. (Modified NTIS abstract)

Availability: NTIS - HRP-0002559 PC $5.25

Douglass, C.W., "Consumer Influence in Health Planning in the Urban
Chetto," Inquiry, 12:157-163, June 1975.

The study analyzed variations in programs for the delivery of personal

health services in eight cities in Michigan receiving Model Cities

grants from HUD. Content analysis of the program proposals followed

by observation of program operation after funding provided the data
necessary for determination of the outcome variable. This variable

was stated in terms of program scores reflecting the orfentation of

each city's program. The scoring procedure is as follows. If more

health services were made available, the program proposal was considered

to be more consumer-oriented. Likewise, if there is a greater per-

2% 3

centage of consumer positions on the administrative agency board, the
administrative structure was considered to be more consumer-oriented.
Lastly, the higher the funding level, the more consumer-oriented the
proposal was believed to be. Three characteristics of the planning/
decision-making process were also hypothesized to have influence on
the outcome variable. These characteristics are: characteristics
of the population, political mobilization of the Model Neighborhood
residents, and size of the Model Neighborhood.

The conclusions are: (1) Variation in the orientation of health
programs is not associated with the identification of participants
as consumers or providers; (2) Political mobilization is associated
with program content, but there is no relationship between consumer
influence and political mobilization; (3) There is a high correlation
between rank ordering of program scores and population ratios (of
consumers to providers); and (4) Decision-making is still dominated
by providers.

Standard research techniques were used to conduct the study.
Calculations are presented.
(7 references)

MacStravic, Robin E., Community Participation and Influence in Health
Care Delivery: Expectations, Performance and Satisfaction, University
of Minnesota, Minneapolis, Minnesota, 1973.

 

Research was carried out to determine if community participation
(in varying level, scope and form) is associated with variations
in selected parameters related to performance of health care programs
and the attitudes of their clients. It was concluded that community
participation did make a difference in the performance of the
program and in the attitudes of their clients. However, the differences
were not as clear, nor on all the parameters predicted by the literature.
It appeared that community participation alters rather than eliminates
problems. The study population was 67 children and youth comprehensive
health care projects funded under P.L. 89-97, Title. II. Fifty centers
provided performance data, while ten provided client attitude data.
(Modified author abstract, Ph.D. thesis)

Availability: XUM Doc #74-10,539 Xerox - $10.00 Film reel-$4.00
Tischler, Gary L., "The Effects of Consumer Control on the Delivery

of Services," American Journal of Orthopsychiatry, 41(3):501-505,
April 1971.

 

Article describes the attempts of one health care system
(Hill-West Haven Division of the Connecticut Mental Health Center)
to deal with the demand for a shift from institutional to consumer
control. The impact of this transition upon the delivery of services

14

is discussed. It could not be concluded that allowing consumers
to be collaborators in the delivery of care guarantees a decrease
in demands for improvements in the health system nor increase in
the system's capability in meeting demands.

(7 references)

13

V. MODELS

Bishop, Peter C. and Beck, Amanda A., "The Consumer Support Group,
An Experimental Innovation in Community Planning, July 1973.

 

This is a research report documenting the problems of consumer
participation and experimental program, called the Consumer Support
Group (CSG) designed to alleviate some of the difficulties of
consumer participation in health planning. CSG was designed in
the format of an experimental approach so that effects of the program
on a group of volunteer consumer board members could be compared to
a control consumer group. The CSG model assumes that the two major
resources for participation are information about health planning
matters and legitimacy to participate in health planning affairs.

The study results indicate that CSG program was successful in
increasing consumer participation because it served as an organization
which provides consumers with information and legitimacy to voice
their views. The CSG design is described, as well as implementation
and effects upon consumers in the program. The appendices include
materials distributed to CSG members.

(9 references)

Glogow, Eli, "Community Participation and Sharing in Control of
Public Health Services," Health Services Reports, 88 (5) :442-448,
May 1973.

 

It is suggested that public health departments be "revitalized"
to be better able to solve current problems in public health by
adopting a model of citizen participation. Such a model requires
community election of members to boards, the sharing of authority
to make policy decisions among health professionals, elected
representatives of the community and elected officials, and admini-
strative and numerous other skills necessary for participatory
decision-making (i.e., group interaction, group dynamics, use of
politics, etc.).

(38 references)

Hessler, R.M. and Walters, M.J., "Consumer Evaluation of Health
Services; Implications for Methodology and Health Care Policy,"
Medical Care, 13(8):683-693, August 1975.

Application of the consumer evaluation model (CEM) indicated
that consumers (untrained as to research methodology, health care
administration, and evaluation) are capable of evaluating a componant
of the health delivery system. In this model, consumers have
complete control over research process, decision-making and

16

development and application of policy recommendations based on research
findings. The pilot study raised the issue of consumer bias; the
degree of technical assistance that should be provided to consumers
without decreasing consumer initiative, autonomy, perspective,

and policy considerations; and the methodological knowledge required

of consumers if they are to have control over the evaluation process.
Based on the CEM experience, five general principles were formulated:
(1) evaluative research can be an ongoing, continuous process which

can provide valuable judgments to program designers and administrators;
(2) there must be provider-consumer exchange and sharing of decision-
making if effectiveness of services and degree of consonancy of service
to community values, expectations and needs are to be high; (3) those
who have the power to set evaluative criteria and to evaluate programs
have the greatest access to policy formulation; (4) consumer evaluation
increases the probability that community norms, values and traditions
are reflected in policies; and, (5) consumers must gain research
methodological skills (i.e., techniques of data analysis).

(26 references)

Hughes, Calista C., Comprehensive Health Planning, Nebraska State
Department of Health, "Nebraska State Plan for Comprehensive Health.
First Edition." Prepared by Nebraska University, January 1974.

The document summarizes the model for health care delivery
system in Nebraska formulated by the cooperative efforts of consumers
and health professionals in the State. The main objective of the
model was to increase accessibility to health care. The State
agency operated under the premise that citizen participation is a
necessary element of plan development and that the quality of consumer
input depends in part on the quality of information available to
the consumers and planners as well. The philosophy of CHP and its
goals are discussed, along with descriptions of mechanisms for goal
implementation and activities undertaken by the State agency during
1973.

(No references)

Availability: NTIS HRP-0002731 PC $4.00

The Institute for Policy Studies, Community Health Alternatives
Project, Model Legislation for a National Community Health Service, 1975.

 

This draft of a model legislation entitled the Health Service
Act providing for a National Community Health Service was prepared as
part of the Community Health Alternatives Project. It was submitted
to Rep. Ronald V. Dellums (D.-Ca.) who introduced a similar service
bill into the U.S. Congress in early 1976. Among other goals, one
is to put the responsibility of health planning and policy-making on
health workers and community residents. In other words, there would

17

be worker and community control of health care.

Availability: Bascom Talley, Community Health Alternatives Project
Institute for Policy Studies
1901 Q St., N.W.
Washington, D.C. 20009 (202) 234-9382

Kane, Rosalie A. and Kane, Robert L., "Galloping
Participation in Health Programs," Chapter 8 in The Challenges of
Community Medicine, N.Y.: Springer Publishing Co., 1974, pp.165-179.

Definitions of consumer participation, its limitations, and real
and potential problems are discussed. A model which emphasizes the
process of planning and the separate roles of consumers and providers
in various stages of the planning cycle is recommended to permit
consumers to make useful, internal, and appropriate contributions.
Both consumers and providers participate in the identification of
community health problems, the first stage of the planning cycle.
However, at the second stage, development of alternatives, providers
are the players due to their technical expertise. Even though pro-
viders and consumers jointly weigh and choose the best alternative,
consumers exercise the final power of decision. Implementation is
the function of providers, with feedback from consumers. Neither
consumers nor providers have a dominant role in the last stage,
evaluation. This function is delegated to outside persons who make
use of both consumer and provider inputs. Success of the model
requires mutual trust and elimination of defensiveness on the part
of both groups.

(14 references)

Lassiter and Co., Inc., Study and Development of Alternative Models
for Consumer Participation, Chicago, I11.:O0ctober 11, 1974, Contract
No. HSM-110-73-534.

 

 

This is the final report of a contract to analyze consumer
participation activities in specific program areas: Migrant Health,
Neighborhood Health Centers, Family Health Centers, Health Networks,
Family Planning and HMO programs. This analysis differentiated
between the effects of socio-economic, ethnic, geographic, and community
size factors from those of leadership, representation, authority and
financing. This differentiation formed the basis for a typology of
consumer participation models. The theory and practice of the three
alternative models were then explored. From this, curricula were developed
for providing consumer participation through technical assistance
and training to regional offices, local project staffs, community
boards and/or target populations.

Availability: Lassiter and Co., Inc.
One East Wacker Dr.
Chicago, IlL. 60601

18

Metsch, Jonathan M. and Veney, James E., "A Model of the Adaptive
Behavior of Hospital Administrators to the Mandate to Implement
Consumer Participation," Medical Care, 12(4):338-350, April 1974.

The model for studying the implementation phase of consumer
advisory boards at 22 voluntary hospitals in New York City is described
in depth. The model was developed to identify significant manipu-
lable variables as intervention points in the planning of programs
involving consumer participation. It was hypothesized that a set
of predisposal and contextual variables (e.g., attitude of hospital
administrators toward consumer participation, adequacy of services,
subsidies, control, number of facilities, number of beds) and imple-
mentation variables (selection and socialization variables) are
related to a set of outcome variables (described by levels of parti-
cipation as measured by consumer/provider interaction, consumer input
and administrative response). There is a logical sequence of variables,
i.e., contextual variables are prior to implementation variables which
are prior to outcome variables. These assumptions were subjected to
regression and path analyses. No conclusive statements were made due
to methodological problems encountered during the research. Four
hypotheses were stated: attitude of administrators toward consumer
participation is directly related to the level of consumer input achieved;
training does not necessarily and automatically generate higher con-
sumer input; smaller programs are more responsive to the mandate; and
if a hospital needs legitimization of its goals, it must have a high
level of consumer participation.

(36 references)

Milio, Nancy, "Dimensions of Consumer Participation and National Health
Legislation," American Journal of Public Health, 64 (4):357-363, April
1974.

 

Consumer involvement in community health care planning ranges
from ratification with little involvement, to participation in policy-
making. Proposals include Experimental Health Services Delivery
System which encourages management health planning; consolidation of
services at the local level; and health revenue sharing. Pending
legislation which provides for consumer input included: Medicredit, which
does not enhance consumer options regarding geographic access to
health care; the Health Care Bill of insurance carriers in which
financing is burdensome to poorer people; and the Health Security Act,
which finances the greatest availability of services and provides an
equitable financing arrangement. (Modified NTIS abstract)

Pecarchik, Robert; Ricci, Edmund; and Nelson, Bardin Jr., "Potential
Contribution of Consumers to an Integrated Health Care System," Public
Health Reports, 91(1):72-76, January-February 1976.

For a complete annotation see Section IIL. ROLE

19

Talley, B.D., Community Health Alternatives Project, Institute for
Policy Studies, "Linking the Unlinked: Toward a National Movement for
Community Health," Health Politics, 5(4):22-28, Summer 1975.

Important elements of the "The Health Rights and Community
Health Services Act" are discussed. The legislation stresses the
burden health workers and community residents must shoulder in health
planning and policy-making. The proposed National Health Service is
based on democratic worker-community control within a structure that
allows for the integration of delivery of health services through a
network of community health centers. Health care funds are distributed
in such a manner that quality health care is available to everyone.
(No bibliography)

Wang, V.L.; Reiter, Hayden; Lentz, Georga A., and Whaples, G.C.,

"An Approach to Consumer-Patient Activation in Health Maintenance.

A Report of the Maryland 1-Year Health Education Demonstration Project,"
Public Health Reports, 90:449-54, September-October 1975.

 

Using the Maryland Consumer Health Education Project (1972) as
an example, the authors suggest a model for the development of "genuine"
consumer participation in comprehensive health planning. The model
grows out of educational concerns and community outreach efforts of the
Extension Service of the University of Maryland and the Community
Pediatric Center. By bringing consumers and providers together on the
same plane the two groups became more sensitive to each other's needs,
roles, and responsibilities in the partnership for health. The pro-
cedures in developing objectives and activities by consumer and pro-
viders are described, along with analyses of objectives which were
(or were not in some cases) achieved.
(6 references)

20

VI. TRAINING

Block, McGibony and Associates, The Selection and Continuing Education
of CHP Boards and Staffs, "Special Report," (Silver Spring, Md.:Block,
McGibony & Associates, Inc.,.September 24, 1973).

 

For a complete annotation see Section II. SELECTION

Galiher, C.G., Needleman, J. and Rolfe, A., "Consumer Participation,"
HSMHA Health Report, 86:99-106, February 1971.

For a complete annotation see Section II. SELECTION

Greer, Ann L., "Training Board Members for Health Planning Agencies,"
Public Health Reports, 91(1):56-61, January-February 1976.

Through a review of the literature, problems of board training and
potential solutions are discussed. In order for consumers and providers
to interact effectively as members of a board there must be common
trusts, willingness to consider alternatives, and accommodate to varying
opinions. Of special concern is the inclusion of dissatisfied groups
in the planning process. Other suggestions for effective board
training are offered.

(14 references)

Henry, Paul, "Pimps, Prostitutes, and Policemen :Education of Consumers
for Participating in Health Planning," American Journal of Public Health,
60(11):2171-2174, November 1970.

 

An approach to the training of the black health consumer for
participating in health planning is considered in terms of a project
inaugurated by the Graduate Department of Community Planning of the
University of Cincinnati in cooperation with the Ecumenical Council
for Continuing Education. The Community Human and Resource Training
(CHART) project offered a ten-week course in neighborhoods that re-
quested the service. Health was only one component of the program.
Action training sessions helped students define their community and how
it operates, diagnose special community problems and concerns, and
develop plans and strategies for neighborhood change. Another part
of the training sessions was the exploration of value systems. Upon
completion of the CHART course, graduates were placed in field stations
located in both the urban and suburban areas to implement the plans
they had developed in the action training sessions. The training
teams worked cross-functionally to achieve unified change in the
community. ®

27°

Kellog, Muriel; Cooper, John L., Guy, Francine; Baker, Frances M. and
Lourie, Madeleine, Evaluation of Consumer Health Training and Education
Programs, January 1973.

 

This evaluation of training programs to equip consumers for parti-
cipating in the health planning process attempts to ascertain the
direct effect of these programs on consumer participation by assessing
differences in program content and structure, identifying training
patterns and assessing the resulting attitudinal and behavioral changes
in the consumer trainees.

Availability: NTIS _ PB-225-282/3, PC $5.75 MF, $2.25

Mariscal and Co., Consumer Board Training and Technical Assistance
to Migrant Health Projects, April 1974, HSM 110-73-483.

 

This report summarizes the board training and technical assistance
provided to four migrant health projects. Topics covered in training
sessions included the role of the board, with special emphasis on
board/staff relationships; drafting articles of incorporation, by-laws,
and other administrative policies; planning comprehensive board strategy
and setting priorities.

(No references)

Availability: Mariscal and Co.
2600 Wilshire Blvd. - Suite 501
Los Angeles, California 90057

Meisner, Lisbeth; Parker, Alberta W.; Austin, Lee; Orr, Cora and
Ortega, Mary Lou, A Training Program for Consumers in Policy-Making
Roles in Health Care Projects, Continuing Education in Health Sciences,
University Extension, and the Division of Public Health and Medical
Administration, School of Public Health, University of California,
Berkeley, 1970.

 

 

In 1968-69 the Consumer Health Project, or Berkeley Consumer
Health Project, developed a training program for members of the policy-,
making boards of three federally funded neighborhoods and one Model
Cities health planning committee in the San Francisco Bay area. This
report discusses the background and organizational structure of each
neighborhood health center and Model City before proceeding to describe
the components of the training program, its effects and recommendations
for future policies.

(No references)

22

Metsch, Jonathan; Berson, Ann; and Weitzner, Martin, "The Impact of
Training on Consumer Participation in the Delivery of Health
Services," Health Education Monographs, 3(3):251-261, Fall 1975.

Article reports findings of a retrospective evaluation of
training provided to six hospital consumer advisory groups. Training
programs were designed to provide information and background material
concerning legislative authority mandating establishment of advisory
groups and its purposes; the organization, function, and delivery
of health services and group development (emphasis on skills necessary
to transform knowledge into action) to consumers. Focusing on the
level of program impact, the study demonstrated that different effects
of training depended on the stage of development of the consumer board.
Five of the six boards indicated positive changes in the number and types
of activities following training. Methodology is not given in detail.
(29 references)

Parker, Alberta, "The Consumer as Policy-Maker - Issues of Training,"
American Journal of Public Health, 60(11):2139-2153, November 1970.

The training needed, and desired, by consumers serving on policy-
making boards of three neighborhood health centers and some issues
raised by this training are addressed. Training programs of the
Berkeley Consumer Health Project are traced through the organizational,
planning, and implementation phases. This experience led to the
formulation of several criteria for effective training programs:
training should be continuous over time; organizational base should
not serve as a barrier; schedule, content, and sequence of sessions
should be flexible; and internal training methods should be utilized as much
as possible.

(5 references)

Phillips, Harry T. and Parkinson, Rebecca S., Enhancing the Role of
the Consumer in Comprehensive Health Planning, Alexandria, Va.: American
Association for Comprehensive Health Planning, May 1974.

 

Proceedings of workshops held to provide staffs of CHP agencies
with an understanding and strategies for working with consumer parti-
cipants in the health planning process are presented. Areas covered
in the workshops include the role and contributions of consumers in
health planning, strategies for identifying consumer constituencies,
conflicts and compromises between consumers and health professionals
and representatives of health providers. References are cited and
names and affiliations of participants are listed. (Modified NTIS
abstract)

Availability: NTIS HRP-0004344/8WW PC $5.00 MF $2.25

23

Society of Public Health Education, San Francisco, Calif., Marvin
D. Strauss, Editor, "Consumer Participation in Health Planning,"
Health Education Monograph No. 32.

 

This collection of articles on approaches to the education of
consumer representatives and health professionals, the consumer's view
of consumer participation, professional participation in comprehensive
health planning, and the psychological and political implications of
consumer participation provides a comprehensive assessment of issues
involved in consumer participation in health planning. A biblio-
graphy is included, as well as an appendix of health education abstracts
pertinent to the social system. (Modified NTIS abstract)

Strauss, Marvin D.; Harten, Carol J. and Kempner, Mark A., "Training
of Planning Personnel for Local and State Agencies," Public Health
Reports, 91(1):51-55, January-February 1976.

Given that the health care field cannot rely indefinitely on
the low-income and/or minority leaders who became active in community
affairs in the 1960's, new ways of learning from and strengthening low-
income and minority group representation are necessary. One method
would be for HSAs to function as quasi-educational institutions to teach
community people a new way of thinking and behaving about community
health and community health services. The necessary elements and
competencies of the new "planner-educators" and a new role for uni-
versities are discussed.
(8 references)

24

VII. TRAINING MATERIALS

Hall and Powers, "An Orientation Manual," Prepared for the Piedmont
Triad Regional Comprehensive Health Planning Council, March 1974.

This orientation manual serves a dual purpose. It was prepared
to acquaint council members who are health professionals with the value
of consumer input into the health planning process and to acquaint
consumer council members with the health planning process. Contents
are divided into three sections. The first section provides background
information on comprehensive health planning and the Piedmont Triad
Regional Comprehensive Health Planning Council (PTRCHPC). The second
part discusses the functions of a planning council, while the third
section presents the mode of operation of PTRCHPC. Appendix includes
an annotated bibliography of 17 references and a glossary of terms
used.

Availability: NTIS HRP-0003857 PC $4.50

The Institute for the Study of Health and Society, Consumer Parti-
cipation and Community Control of Health Services Project, HSM-110-
71-201, Consumer Participation in Health - Curriculum - Volume I -
Guidebook, April 1972.

 

This curriculum is intended for use by health professionals
schools, consumer groups, CHP councils, and boards of health centers
and free clinics. It serves as a reference book as well as a
training guide. Six topics are presented in outline format. These
six sections cover a range of options for consumer action and to
increase accountability to consumers. Section III gives a sampling
of consumer issues; Section IV covers consumer health arenas, including
Hill-Burton, CHP and RMP. Section V presents the OEO neighborhood
health center experience with consumer participation in policy-making.
The last section lists national organizations which are involved in
representing the consumer perspective in changing the health care
system. In each section readings and audio-visual materials followed
by a discussion are suggested.

Availability: Institute for the Study of Health and Society
1050 Potomac St., N.W.
Washington, D.C. 20007

Madison, Terry Mizrohi, A Manual for Community Health Organizing: A
Guide for Individuals and Groups Working to Improve the Health System,
Virginia Commonwealth University, 1974.

 

 

25

The manual is directed to everyone who is interested in becoming
more knowledgeable and more effective in the field of consumer health.
It provides a brief overview of the consumer health movement, an outline
of six top priorities and an outline of specific and organized pro-
cedures for taking community action to improve health services.

(19 references)

Northwest Indiana Comprehensive Planning Council, Inc., Regional
Health Planning. A Training Manual, January 1973.

 

The document reports the consumer training program developed
and implemented by the Northwest Indiana Comprehensive Planning
Council. It provides guidelines by which the educational format,
planning the educational process and testing, evaluating and reporting
the results of the program may be designed. Emphasis is placed on
the use of consumer education task forces responsible for identifying
needs, setting goals and priorities in program areas. Appendices
include worksheets, simulation game exercise and a discussion of the
Charette Planning Process.

Availability: NTIS HRP-0O0038521/WW PC $6.00 MF $2.25
Parkum, Virginia S., Citizen Participation:A Bibliography of Theory

and Practice, with Special Emphasis on Comprehensive Health Planning,
Pennsylvania Department of Public Health, Harrisburg, Pa., April 1973.

 

This bibliography was generated as part of a two-year study of
consumer participation in comprehensive health planning in Pennsylvania.
References are divided into sections on theory and actual participation
in health and social service activities. This second section includes
references to provider participation as well as consumer participation
in health activities.

26

 

The Division of Planning Methods and Technology,
BHPRD, through the National Health Planning
Information Center, is a primary resource for
current information on a wide variety of topics
relevant to health planning and resources devel-
opment. To facilitate the dissemination of
information to health planners, the Center will
publish selected monographs in three series:

1. Health Planning Methods and Technology

This series will focus on the technical and
administrative aspects of the health planning
process, including such areas as methods and
approaches to the various aspects of the

health planning process, techniques for ana-,
lyzing health planning information and problems,
and approaches to the effective dissemination
and utilization of technical information.

2. Health Planning Information

 

This series will focus on data and information

to support the health planning process, including
sources of information and data for use in

health planning.

3. Health Planning Bibliography

 

This series will focus on general and specialized
bibliographies that relate to topical subject
areas in health planning.

Consumer Participation in Health Planning: An Annotated
Bibliography is the second publication in the Health
Planning Bibliography Series.

 

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