Consumer Participation in Community Health Programs: A Comparative Analysis of Two Programs James D. Shepperd, Jr., MD, MPH Washington, DC
Two model inner city health-care delivery systems are examined in terms of their organizational structure, the role of the consumer within them, their strategies for change, and their ultimate impact and effectiveness. A group practice prepayment plan in Baltimore had consumers on its governing board and, in alliance with a powerful medical institution, successfully organized around political, economic, and social issues. An Office of Economic Opportunity (OEO) grant-supported, neighborhood health center in Washington, D.C. was less effective due to its lack of community representation in the decision-making process. The Baltimore model influenced the federal, state, and local governments, while the Washington, D.C. model had stronger local, than national, effects. Escalation of consumer involvement in the health-care system in the United States took a quantitative leap forward with the passage of legislation which grew out of changes in the national attitude toward the "poor" during the 1960s. Under the leadership of President John F. Kennedy, enabling legislation was prepared. Several associates of President Kennedy who had a high level of social awareness men such as Sandy Cravitz, now dean of Stony Brook Medical College, and George Silver of Yale University convinced the President of the need for this legislation. The legislation, passed as "Great Society" laws under President Lyndon B. Johnson, suggested an increasing awareness of the problems of the poor in this country as well as the failure of the current health-care delivery systems.1
Dr. Shepperd is formerly Medical Director, East Baltimore Medical Plan and Assisiant Professor of Medicine, Johns Hopkins Medical School and co-founder, National Association of Neighborhood Health Centers. Requests for reprints should be addressed to Dr. James D. Shepperd, Jr., Assistant Professor of Community Health Practice, Howard University College of Medicine, Washington, DC 20059.
The legislation was prepared under a bill which called for development of the Office of Economic Opportunity. The major objective of this bill was social change. Mentioned in one paragraph was the fact that some social change might be achieved through organizing communities around health issues. This kind of wording was also placed in legislation to support the existing Department of Health, Education, and Welfare and called for "maximum feasible participation" of the poor.2 This legislation required that the poor, in order that federal funds be spent, be involved in the decisionmaking process of the health-care delivery system. Participation of lay-. men in the decision-making process and planning is not unique; however, these persons were usually of high status in the community - bankers, attorneys, etc.3 Involvement of the poor consumer was felt to be a good idea3'4 and this paper will show, and attempt to analyze, consumer involvement in two model inner city healthcare delivery systems. One model, the East Baltimore Community Corporation (EBCC), is funded by the Department of Health, Education, and Wel-
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fare. The second model is an Office of Economic Opportunity funded organization in Washington, D.C. called Community Group Health Foundation, Incorporated (CGHF). This paper shall attempt to discuss the goals and objectives of these organizations, their strategies for change, their impact, and their effectiveness as change agents in the health-care delivery system.
Organization Models EBCC was organized by a group of East Baltimore residents in partnership with representatives from the Johns Hopkins Medical Institutions. The birth of the EBCC was a difficult one, which followed the decision of the community to form an alliance with Johns Hopkins Medical Institutions. It had become obvious that the two competing groups, Johns Hopkins and EBCC, had to join forces or lose out entirely in their attempts to acquire federal support for their programs.5 The EBCC Board of Trustees is composed of 21 members, of whom two are community health professionals, two are health professionals from the medical institution, and 17 are lay members who are representatives of community organizations.6 This Board if supported by a small advisory group which consists of one physican-politician, one businessmanpolitician, an attorney, and an architect. Lay board members represent such organizations as Model Cities, the Head Start Program, the Community Action Agency, housing and home improvement organizations, local political organizations, and interested resident groups. Members of the Board were selected by their representative 115
organizations and appointed to the Board with the agreement of the other Board members. As this composition did not satisfy the OEO guidelines, "50 percent elected consumer participation,"7 the application for OEO money was withdrawn. It was not the organization's intent to comply with OEO guidelines on income eligibility and elected Board members. The operational program selected by EBCC was the establishment of a group practice prepayment plan to serve all persons who lived within the general East Baltimore area, regardless of income level. (This service program has also been called an HMO - Health Maintenance Organization.) CGHF was established in response to outcries of consumers, within an inner city area, for increased access to health service facilities. It was conceived as a result of consumers' lack of private practitioners, lack of access to hospitals and public health facilities, and problems with the categorical approach to the delivery of services. After repeated frustrations over a fouryear period, the consumers were able to enlist the assistance of a "disinterested" university as well as an established group practice prepayment plan in the city. The change agents were a physician within the university, willing to take on the task of establishing a health-service system, and a representative from the consumer group. The governing board of this organization is made up of representatives from the three organizations: four members of the board are representatives of the consumer group (but are not consumers under the OEO guidelines) plus one representative, who does not live within the neighborhood; four representatives are from Howard University - the deans of the medical and dental schools, chairman of the Department of Community Health Practice and the administrative assistant to the dean; and the four representatives from the group practice prepayment plan are the executive director of the plan and three board members, respectively. In order to comply with the OEO guidelines for consumer participation, an Advisory Council was established which consisted of 11 persons from the community, presumably eligible under the OEO guidelines for services within the center, and ten persons who were 116
either professionals, or representatives of community organizations. This Advisory Council was created to advise the board on needs of community residents for health services and many other issues involving the health center. In addition, they were given the responsibility to advise and consent on selection of directors of the organization. The program chosen by this organization was a grantsupported neighborhood health center which would provide comprehensive services only to those who lived within a geographic area and who met the OEO income guidelines for care. It was the intent of this organization to continuously comply with OEO guidelines for consumer involvement.
Role of the Consumer In the CGHF organization, there were no consumers on the board. I n s tead, there was a consumerdominated advisory health council. Its relationship to the board was never defined. By attempting to follow OEO guidelines, the consumers sought to have a voice in all matters concerning the personnel, programs, selection of trainees, and facilities. In practice, they involved themselves most heavily in personnel matters of the organization, while avoiding issues around the delivery of health services. Questions regarding personnel policies, personalities, bad conduct, and relationships between staff and advisory council consumed the majority of their efforts. Almost one year was spent in an argument between the board and the advisory council regarding the board's authority to name directors without the consent of the advisory council. When presented with questions of setting priorities, adding services, or determining patient eligibility, consumer response was slow .and their involvement, minimal. Recommendations of the director concerning important matters were usually a c c e pted. However, if these recommendations were not acceptable to the funding agency, there was no support of the decision by the consumers. The issues dealt with by this organization were drug abuse treatment programs, alcoholism treatment, policy on therapeutic abortions, policy on mental health, eye services, transportation, and hours of operation. In
reality, all decisions were made by the Board of Directors8 and the voice of the community representatives was exceptionally weak. Few of the priorities set by the community representatives were adopted by the full board. In the EBCC model, consumers were board members and, indeed, the chairman of the board was a layman. Since a majority of the board were lay residents in the community, they held the significant committee posts and offices in the corporation. The most important committee of the board, the Health Programs Committee, is cochaired by a consumer and a physician. The board Committee on Personnel has restricted its interest to policy setting and the selection of key personnel. No other board members are involved in these questions; the committee reports to the board on these issues and their recommendations are almost always adopted. All additions, deletions, and changes in the operational program of the corporation are discussed by the Health Programs Committee. Issues which are raised by the committee, staff, or board are referred to the appropriate committee where resolution is made on 90 percent of issues raised. Sometimes additional studies are required; however, time limits are set on all assigned tasks and no issues are left unresolved. The chairman works to blend the forces on the board, but suppresses hostile or diversionary groups. This approach has resulted in record progress for the organization, but not without the cost of the development of counterbalancing forces. Because of its political astuteness, the board leadership has been able to solidify its position and bring opponents around to the majority opinion without splitting the board over issues for which there should be legitimate conflict.6
Comparison of Change Strategies Used by EBCC and CGHF In both cases it was necessary to provoke institutional changes in funding agencies, universities, and state and local governments. The EBCC consumers initially approached all agencies following the 1968 riots, a time of relative chaos, with revolutionary-style tactics. They t hreatened revolutions, burnings,
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strikes, etc. These methods were useful in getting the attention of these influential institutions. As a result, EBCC was able to form an alliance with a powerful establishment, Johns Hopkins Medical Institutions. Through the tactics of threats of violence, important contacts with city and state government and national agencies, and public information campaigns, EBCC members influenced the Department of Health, Education, and Welfare to require Hopkins to have consumers in meaningful roles in the decisionmaking process as provided by the enabling legislation, before federal funds would be available for the health program. Once the alliance was formed with the medical institution, EBCC began to consolidate its political position within the community. It went so far as to form an effective political organization that sought political offices, endorsed politicians, and otherwise aided persons running for public positions. It also tried to gain control of the boards of directors of other community organizations operating in what they called "their territory." EBCC was able to successfully place selected members on the boards of Model Cities, the Housing Corporation, the Eastside Democratic Club, Head Start, the Community Action Agency, and the Dunbar Community School. Having gained a constituency, it was able to demand the cooperation of the powerful medical institution. As a result of this alliance, the community institution set up a charette hoping to raise the level of consciousness of the community members about health matters and to find out what community priorities were. Throughout this process, the community and Hopkins Institutions found many common elements upon which they could agree, moved forward together, and made a strongly favorable impression upon the "establishment." The change agents in this organization had unique characteristics. In one case, a seemingly unsophisticated layman, who worked in the public high school, acted as a moderate spokesman for the community. He is actually an aggressive, extremely perceptive, goaloriented leader. The other change agent was a highly vocal person who acted as a foil to the moderate sounding board chairman. The change agents for the medical institutions were two
physicians who sought to bring innovation to the health-care delivery field. One was a young internist with political savvy who was willing to "mix it up" with the community representatives and absorb their racial diatribes and personal attacks, while gaining their confidence and support for making an impact on the medical institution itself. The other physicianchange agent was an extremely persuasive and knowledgeable health-care planner who worked with great honesty, and exceptional determination and conviction. He was able to convince the community that the group practice model would best serve their interests and assure access to a high quality health-care system. These EBCC board representatives from Johns Hopkins made intense efforts to educate lay members of the board, who proved to be willing students of the Hopkins technocracy. CGHF began as a grass roots organization among the consumers. They had organized around the health issues. These consumers (a mothers' club) had made application to the city health department, private agencies, universities, and to the federal government without success. They secured the support of a community action agency which, because of its superior sophistication, was able to assemble resources to help achieve their goal. CGHF first enlisted the chairman of the Department of Preventive Medicine, now the Department of Community Health Practice, at Howard University. The addition of the technical skills offered by a few university staff members enabled them to prepare an adequate proposal, which still failed to be funded. Subsequently, the university and community received assistance from an established group practice prepayment plan to prepare their proposal for a health center. Although numerous health centers had been funded by OEO throughout the country,9 the OEO directors were extremely reluctant to fund such a center within the nation's capital. The funding agency felt that it would possibly serve as a source of embarrassment and theoretically compromise national efforts. This was a serious barrier. While one application was pending, the riots following the death of Doctor Martin Luther King occurred. The change agents chose this moment to strike harder for their
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proposal. They enlisted the aid of the city fathers, university health professionals, and the public health department to bring pressure to bear upon the funding agency. They were successful. With the award of the grant, implementation was turned over to the professionals of the Community Action Agency (CAA), university, and group practice plan. The community representatives were given no important assignments and essentially were eliminated from the decision-making process. The four community representatives placed on the Board of Directors were employees of the CAA, rather than potential consumers of the health center. In actuality, potential consumers were relegated to the Advisory Council. The board members brought with them the technical skills to perform the task, ability to select qualified staff and contacts within the community, city, and federal government. No efforts were made to raise the level of consciousness of the Advisory Council members nor to educate them in matters related to the operation of a health center program. The Advisory Council members did not have the opportunity to represent the organization in their contacts with the community, the various governmental agencies, nor with the other health-service providers within the community. The consumer had little impact on the external concerns of the health organization. The methods of dealing directly with the center were essentially political harassment and attempts to build up a countervailing force to the board of directors and to contain the administrative priorities, responsibilities, and prerogatives of the staff. 1 0 The change agents for CGHF were the president of the Community Action Agency and the physician Board president. The CAA president was a woman who had worked tirelessly for social change in her community by seeking to upgrade the economic status of the people and bring needed services. Many times she had been successful. Supported by a knowledgeable upper class suburbanite who saw her role as not of a change agent to improve her old neighborhood, the CAA president had obtained mental health, legal, and welfare services for her community. The Board president, a male change agent, was an 117
extremely articulate and knowledgeable university professor who sought innovation and change in the health care field, but had not previously been involved in the community program. Upon his acceptance by the community group, meetings were called to seek aid from various agencies and the technically sophisticated group practice prepayment plan organization.8
Impact of the Program on the Health Services Delivery Both programs, because of their uniqueness in their communities, had considerable impact on the health-care system within the communities. Neither program took responsibility for a large number of patients. However, the concepts under which both programs operated did indeed have far-reaching local and national implications. EBCC, a group practice prepayment plan, effectively served as a stimulus for the organization of the community around the health issue. The organization gained sufficient strength to develop a viable institution which incorporated, gained nonprofit status, and drew numerous sources of money for the operation of its various programs. It also welded together several conflicting groups into an effective organization. The organization was highly successful in the political arena, capturing 17 out of 18 available elected offices, within the district around the center. Most prominent among the elected officials were one state senator, two city councilmen, and one state legislator. The concept of the plan drew both opposition and support from other providers of care. Those who saw this as a benefit to the patient felt that it would be an exceptionally good program for the community. Some providers saw the closed panel of physicians as a threat to the established medical practice on a fee-forservice basis. The local health department felt that the program would be an exceptionally valuable one for managing the health problems of this difficult population and supported the program. However, in contrast to the Washington, D.C. example, there was little modification in the health department's policy of delivering health services in categorical clinics. 118
The state health department moved swiftly, although reluctantly, to provide support through legislation and administrative approval of the group practice prepayment plan. They sought to reduce the excessive revenue being used for health care. They began to make efforts to stimulate the growth of group practice plans through contracts with other organizations willing to take responsibility for an enrolled population. The governor signed legislation which enabled the state to make a contract with a private organization. On the federal level, a great deal of excitement and interest was generated by the effort of this community to correct some of its own ills. The federal branches of government took strong note of this and pressed forward to spread this idea. The Department of Health, Education, and Welfare acted quickly to prepare enabling guidelines and regulations for other interested organizations. Several bills were introduced into Congress which stipulated incentives for organizations to deliver group practice prepayment plan services to underserved communities such as East Baltimore. President Nixon grasped the group practice prepayment programs idea 1 and referred to the East Baltimore example in some of his discussions concerning his health programs. One of the strongest impacts of the EBCC was on the Johns Hopkins Medical Institutions. The idea of having such a service program received strong backing and the commitment of the university shook that organization to its foundations. The medical institutions did a complete turnaround in reordering their priorities from education and research to provision of services. Previously, little attention had been paid to how services were rendered at the medical institutions. There was extreme resistance to this movement that created strong political enemies for the administrators of the hospital and the medical school. Involvement of the university faculty was made only with great reluctance, although many faculty members became great supporters of the programs and made strong commitments to its success. The university began to realize its role within the East Baltimore community and the necessity for involvement. It also began to deal with its internal
attitude toward racism, poverty groups, economic advancement, etc. As a result of the university commitment to this program, previous barriers of hostility between the community and the medical institutions began to crumble. They began to understand that they were mutually dependent, with mutual goals, objectives, and needs for support and they learned to work together toward achievement of these goals. CGHF initially involved the community in many of its activities and, therefore, had a profound effect on uplifting the hopes of community residents that something would be done. However, there was little or no spinoff on community development as a result of the formation of the health center. No supportive nor allied organizations were formed, perhaps due, in part, to the existence of the strong and active Community Action Agency which had spawned the neighborhood health center. As time progressed, a great deal of jealousy developed between the health center and the CAA, resulting in a decrease in the effectiveness of the health center as a rallying point and in the effectiveness of the CAA in provoking social change. Eventually the CAA refused to support the efforts of the health center in obtaining land for its new building and to organize community support for health center programs. The impact of the health center on the city health department was profound. As a result of the concept of providing comprehensive care for a patient under one roof as opposed to the categorical approach, the health department established a network of comprehensive neighborhood health centers. These health centers provided primary, comprehensive care for the entire family in many many locations throughout the city, replacing the categorical well-baby, chest, and immunization clinics, etc. On the federal level, the center was somewhat effective in influencing the funding agency to modify its policies. Although the funding agency advocated community involvement and responsiveness to community needs by the center personnel, it did not foster such a policy by the administrators of the health centers. The needs of center administrators were not met by the funding agencies. Indeed, calls for help fell on- unsympathetic ears and pro-
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NO. 2, 1977
voked terse memos and directives. Through the efforts of the Washington-based center, the funding agency began to modify its stance on sending directives. OEO started to allow some latitude in how center staffs were to be organized and facilities laid out, and began to respond to the problems of the health center personnel, rather than dictating policies without their input. 1 2 The university involved with the health center ignored the plans for the health center operation. Little or no faculty involvement or support was evident until the center became successful in the delivery of services. Once the center was established, the university faculty sought to use this as a training ground for medical students and house officers. The university, however, was forced by its students to involve itself in the activities of the center and develop programs for medical students and house staff in community medicine. This represented a change from the purely clinical teaching curriculum previously in existence. Students demanded that they be permitted to observe center operations and consumer involvement in medical
affairs, and they formed a committee to enable them to have a meaningful role in the health center. In both programs, then, consumers were able to have considerable influence in the organization and operation of the centers. EBCC appears to have been more effective in involving and educating the consumer and in making his voice heard in decision making. Consumer involvement in important board functions seems to be the key to success. Since they went beyond the immediate health-care delivery system into housing, economic development, and politics, EBCC consumers clearly reached more people and provoked more social change than did the more narrowly based OEO center in Washington. EBCC is a model for a national campaign and a federal policy, whereas the comprehensive-care model in Washington was not found worthy of duplication and is now attempting to convert its operation to the prepayment model represented in East Baltimore. Whether the EBCC model of consumer involvement can be replicated is a question for the next decade's study.
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Literature Cited 1. Kramer RM: Participation of the Poor. Englewood Cliffs, NJ, Prentice-Hall, 1966, p 2 2. Moynihan DP: Maximum Feasible Misunderstanding: Community Action in the War on Poverty. New York, Free Press, 1969, pp 167-205 3. Bellin LE: Changing composition of voluntary hospital boards - an inevitable prospect for the 1970s. HSMHA Health Rep 86(8): 674-681, 1971 4. Arnstein S: A ladder of citizen participation. J Am Inst Planning 35: 216-224, 1969 5. The Johns Hopkins Medical Institutions: Office of Health-Care Programs - A Three Year Summary: 1969-1971. Baltimore, 1971, pp 6-7, 41-47 6. Arnstein S: Community control as a factor of health-care innovation: The East Baltimore experience. Report to Model Cities Contract HSM-1 1 0-70-353, Baltimore, 1971 7. US Department of Health, Education, and Welfare, Office of Economic Opportunity: Guidelines for Consumer Participation. Washington, DC, US Government Printing Office, 1968, p 17 8. Partridge K: Consu mer participation, thesis. Johns Hopkins School of Hygiene and Public Health, Baltimore, 1972 9. Wolfe S: Primary health care for the poor in the United States and Canada. Int J Health Serv 2: 21 7-228, 1972 10. Glogow E: Community participation and sharing in control of public health services. Health Serv Rep 88: 442-448, 1973 11. Nixon RM: Message on health and hospitalization (H Doc No 92-49), referred to 92d US Congress, 1st Sess, February 18, 1971. In Congressional Record, vol 117, pt 3. Washington DC, US Government Printing Office, 1971, pp 3015-3021 12. Sparer G, Dines G, Smith D: Consu mer participation in OEO-assisted neighborhood health centers. Am J Public Health 60(6): 1099-1102, 1972
119
Two model inner city health-care delivery systems are examined in terms of their organizational structure, the role of the consumer within them, their strategies for change, and their ultimate impact and effectiveness. A group practice prepayment plan in Baltimore had consumers on its governing board and, in alliance with a powerful medical institution, successfully organized around political, economic, and social issues. An Office of Economic Opportunity (OEO) grant-supported, neighborhood health center in Washington, D.C. was less effective due to its lack of community representation in the decision-making process. The Baltimore model influenced the federal, state, and local governments, while the Washington, D.C. model had stronger local, than national, effects. Escalation of consumer involvement in the health-care system in the United States took a quantitative leap forward with the passage of legislation which grew out of changes in the national attitude toward the "poor" during the 1960s. Under the leadership of President John F. Kennedy, enabling legislation was prepared. Several associates of President Kennedy who had a high level of social awareness men such as Sandy Cravitz, now dean of Stony Brook Medical College, and George Silver of Yale University convinced the President of the need for this legislation. The legislation, passed as "Great Society" laws under President Lyndon B. Johnson, suggested an increasing awareness of the problems of the poor in this country as well as the failure of the current health-care delivery systems.1
Dr. Shepperd is formerly Medical Director, East Baltimore Medical Plan and Assisiant Professor of Medicine, Johns Hopkins Medical School and co-founder, National Association of Neighborhood Health Centers. Requests for reprints should be addressed to Dr. James D. Shepperd, Jr., Assistant Professor of Community Health Practice, Howard University College of Medicine, Washington, DC 20059.
The legislation was prepared under a bill which called for development of the Office of Economic Opportunity. The major objective of this bill was social change. Mentioned in one paragraph was the fact that some social change might be achieved through organizing communities around health issues. This kind of wording was also placed in legislation to support the existing Department of Health, Education, and Welfare and called for "maximum feasible participation" of the poor.2 This legislation required that the poor, in order that federal funds be spent, be involved in the decisionmaking process of the health-care delivery system. Participation of lay-. men in the decision-making process and planning is not unique; however, these persons were usually of high status in the community - bankers, attorneys, etc.3 Involvement of the poor consumer was felt to be a good idea3'4 and this paper will show, and attempt to analyze, consumer involvement in two model inner city healthcare delivery systems. One model, the East Baltimore Community Corporation (EBCC), is funded by the Department of Health, Education, and Wel-
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 69, NO. 2, 1977
fare. The second model is an Office of Economic Opportunity funded organization in Washington, D.C. called Community Group Health Foundation, Incorporated (CGHF). This paper shall attempt to discuss the goals and objectives of these organizations, their strategies for change, their impact, and their effectiveness as change agents in the health-care delivery system.
Organization Models EBCC was organized by a group of East Baltimore residents in partnership with representatives from the Johns Hopkins Medical Institutions. The birth of the EBCC was a difficult one, which followed the decision of the community to form an alliance with Johns Hopkins Medical Institutions. It had become obvious that the two competing groups, Johns Hopkins and EBCC, had to join forces or lose out entirely in their attempts to acquire federal support for their programs.5 The EBCC Board of Trustees is composed of 21 members, of whom two are community health professionals, two are health professionals from the medical institution, and 17 are lay members who are representatives of community organizations.6 This Board if supported by a small advisory group which consists of one physican-politician, one businessmanpolitician, an attorney, and an architect. Lay board members represent such organizations as Model Cities, the Head Start Program, the Community Action Agency, housing and home improvement organizations, local political organizations, and interested resident groups. Members of the Board were selected by their representative 115
organizations and appointed to the Board with the agreement of the other Board members. As this composition did not satisfy the OEO guidelines, "50 percent elected consumer participation,"7 the application for OEO money was withdrawn. It was not the organization's intent to comply with OEO guidelines on income eligibility and elected Board members. The operational program selected by EBCC was the establishment of a group practice prepayment plan to serve all persons who lived within the general East Baltimore area, regardless of income level. (This service program has also been called an HMO - Health Maintenance Organization.) CGHF was established in response to outcries of consumers, within an inner city area, for increased access to health service facilities. It was conceived as a result of consumers' lack of private practitioners, lack of access to hospitals and public health facilities, and problems with the categorical approach to the delivery of services. After repeated frustrations over a fouryear period, the consumers were able to enlist the assistance of a "disinterested" university as well as an established group practice prepayment plan in the city. The change agents were a physician within the university, willing to take on the task of establishing a health-service system, and a representative from the consumer group. The governing board of this organization is made up of representatives from the three organizations: four members of the board are representatives of the consumer group (but are not consumers under the OEO guidelines) plus one representative, who does not live within the neighborhood; four representatives are from Howard University - the deans of the medical and dental schools, chairman of the Department of Community Health Practice and the administrative assistant to the dean; and the four representatives from the group practice prepayment plan are the executive director of the plan and three board members, respectively. In order to comply with the OEO guidelines for consumer participation, an Advisory Council was established which consisted of 11 persons from the community, presumably eligible under the OEO guidelines for services within the center, and ten persons who were 116
either professionals, or representatives of community organizations. This Advisory Council was created to advise the board on needs of community residents for health services and many other issues involving the health center. In addition, they were given the responsibility to advise and consent on selection of directors of the organization. The program chosen by this organization was a grantsupported neighborhood health center which would provide comprehensive services only to those who lived within a geographic area and who met the OEO income guidelines for care. It was the intent of this organization to continuously comply with OEO guidelines for consumer involvement.
Role of the Consumer In the CGHF organization, there were no consumers on the board. I n s tead, there was a consumerdominated advisory health council. Its relationship to the board was never defined. By attempting to follow OEO guidelines, the consumers sought to have a voice in all matters concerning the personnel, programs, selection of trainees, and facilities. In practice, they involved themselves most heavily in personnel matters of the organization, while avoiding issues around the delivery of health services. Questions regarding personnel policies, personalities, bad conduct, and relationships between staff and advisory council consumed the majority of their efforts. Almost one year was spent in an argument between the board and the advisory council regarding the board's authority to name directors without the consent of the advisory council. When presented with questions of setting priorities, adding services, or determining patient eligibility, consumer response was slow .and their involvement, minimal. Recommendations of the director concerning important matters were usually a c c e pted. However, if these recommendations were not acceptable to the funding agency, there was no support of the decision by the consumers. The issues dealt with by this organization were drug abuse treatment programs, alcoholism treatment, policy on therapeutic abortions, policy on mental health, eye services, transportation, and hours of operation. In
reality, all decisions were made by the Board of Directors8 and the voice of the community representatives was exceptionally weak. Few of the priorities set by the community representatives were adopted by the full board. In the EBCC model, consumers were board members and, indeed, the chairman of the board was a layman. Since a majority of the board were lay residents in the community, they held the significant committee posts and offices in the corporation. The most important committee of the board, the Health Programs Committee, is cochaired by a consumer and a physician. The board Committee on Personnel has restricted its interest to policy setting and the selection of key personnel. No other board members are involved in these questions; the committee reports to the board on these issues and their recommendations are almost always adopted. All additions, deletions, and changes in the operational program of the corporation are discussed by the Health Programs Committee. Issues which are raised by the committee, staff, or board are referred to the appropriate committee where resolution is made on 90 percent of issues raised. Sometimes additional studies are required; however, time limits are set on all assigned tasks and no issues are left unresolved. The chairman works to blend the forces on the board, but suppresses hostile or diversionary groups. This approach has resulted in record progress for the organization, but not without the cost of the development of counterbalancing forces. Because of its political astuteness, the board leadership has been able to solidify its position and bring opponents around to the majority opinion without splitting the board over issues for which there should be legitimate conflict.6
Comparison of Change Strategies Used by EBCC and CGHF In both cases it was necessary to provoke institutional changes in funding agencies, universities, and state and local governments. The EBCC consumers initially approached all agencies following the 1968 riots, a time of relative chaos, with revolutionary-style tactics. They t hreatened revolutions, burnings,
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strikes, etc. These methods were useful in getting the attention of these influential institutions. As a result, EBCC was able to form an alliance with a powerful establishment, Johns Hopkins Medical Institutions. Through the tactics of threats of violence, important contacts with city and state government and national agencies, and public information campaigns, EBCC members influenced the Department of Health, Education, and Welfare to require Hopkins to have consumers in meaningful roles in the decisionmaking process as provided by the enabling legislation, before federal funds would be available for the health program. Once the alliance was formed with the medical institution, EBCC began to consolidate its political position within the community. It went so far as to form an effective political organization that sought political offices, endorsed politicians, and otherwise aided persons running for public positions. It also tried to gain control of the boards of directors of other community organizations operating in what they called "their territory." EBCC was able to successfully place selected members on the boards of Model Cities, the Housing Corporation, the Eastside Democratic Club, Head Start, the Community Action Agency, and the Dunbar Community School. Having gained a constituency, it was able to demand the cooperation of the powerful medical institution. As a result of this alliance, the community institution set up a charette hoping to raise the level of consciousness of the community members about health matters and to find out what community priorities were. Throughout this process, the community and Hopkins Institutions found many common elements upon which they could agree, moved forward together, and made a strongly favorable impression upon the "establishment." The change agents in this organization had unique characteristics. In one case, a seemingly unsophisticated layman, who worked in the public high school, acted as a moderate spokesman for the community. He is actually an aggressive, extremely perceptive, goaloriented leader. The other change agent was a highly vocal person who acted as a foil to the moderate sounding board chairman. The change agents for the medical institutions were two
physicians who sought to bring innovation to the health-care delivery field. One was a young internist with political savvy who was willing to "mix it up" with the community representatives and absorb their racial diatribes and personal attacks, while gaining their confidence and support for making an impact on the medical institution itself. The other physicianchange agent was an extremely persuasive and knowledgeable health-care planner who worked with great honesty, and exceptional determination and conviction. He was able to convince the community that the group practice model would best serve their interests and assure access to a high quality health-care system. These EBCC board representatives from Johns Hopkins made intense efforts to educate lay members of the board, who proved to be willing students of the Hopkins technocracy. CGHF began as a grass roots organization among the consumers. They had organized around the health issues. These consumers (a mothers' club) had made application to the city health department, private agencies, universities, and to the federal government without success. They secured the support of a community action agency which, because of its superior sophistication, was able to assemble resources to help achieve their goal. CGHF first enlisted the chairman of the Department of Preventive Medicine, now the Department of Community Health Practice, at Howard University. The addition of the technical skills offered by a few university staff members enabled them to prepare an adequate proposal, which still failed to be funded. Subsequently, the university and community received assistance from an established group practice prepayment plan to prepare their proposal for a health center. Although numerous health centers had been funded by OEO throughout the country,9 the OEO directors were extremely reluctant to fund such a center within the nation's capital. The funding agency felt that it would possibly serve as a source of embarrassment and theoretically compromise national efforts. This was a serious barrier. While one application was pending, the riots following the death of Doctor Martin Luther King occurred. The change agents chose this moment to strike harder for their
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proposal. They enlisted the aid of the city fathers, university health professionals, and the public health department to bring pressure to bear upon the funding agency. They were successful. With the award of the grant, implementation was turned over to the professionals of the Community Action Agency (CAA), university, and group practice plan. The community representatives were given no important assignments and essentially were eliminated from the decision-making process. The four community representatives placed on the Board of Directors were employees of the CAA, rather than potential consumers of the health center. In actuality, potential consumers were relegated to the Advisory Council. The board members brought with them the technical skills to perform the task, ability to select qualified staff and contacts within the community, city, and federal government. No efforts were made to raise the level of consciousness of the Advisory Council members nor to educate them in matters related to the operation of a health center program. The Advisory Council members did not have the opportunity to represent the organization in their contacts with the community, the various governmental agencies, nor with the other health-service providers within the community. The consumer had little impact on the external concerns of the health organization. The methods of dealing directly with the center were essentially political harassment and attempts to build up a countervailing force to the board of directors and to contain the administrative priorities, responsibilities, and prerogatives of the staff. 1 0 The change agents for CGHF were the president of the Community Action Agency and the physician Board president. The CAA president was a woman who had worked tirelessly for social change in her community by seeking to upgrade the economic status of the people and bring needed services. Many times she had been successful. Supported by a knowledgeable upper class suburbanite who saw her role as not of a change agent to improve her old neighborhood, the CAA president had obtained mental health, legal, and welfare services for her community. The Board president, a male change agent, was an 117
extremely articulate and knowledgeable university professor who sought innovation and change in the health care field, but had not previously been involved in the community program. Upon his acceptance by the community group, meetings were called to seek aid from various agencies and the technically sophisticated group practice prepayment plan organization.8
Impact of the Program on the Health Services Delivery Both programs, because of their uniqueness in their communities, had considerable impact on the health-care system within the communities. Neither program took responsibility for a large number of patients. However, the concepts under which both programs operated did indeed have far-reaching local and national implications. EBCC, a group practice prepayment plan, effectively served as a stimulus for the organization of the community around the health issue. The organization gained sufficient strength to develop a viable institution which incorporated, gained nonprofit status, and drew numerous sources of money for the operation of its various programs. It also welded together several conflicting groups into an effective organization. The organization was highly successful in the political arena, capturing 17 out of 18 available elected offices, within the district around the center. Most prominent among the elected officials were one state senator, two city councilmen, and one state legislator. The concept of the plan drew both opposition and support from other providers of care. Those who saw this as a benefit to the patient felt that it would be an exceptionally good program for the community. Some providers saw the closed panel of physicians as a threat to the established medical practice on a fee-forservice basis. The local health department felt that the program would be an exceptionally valuable one for managing the health problems of this difficult population and supported the program. However, in contrast to the Washington, D.C. example, there was little modification in the health department's policy of delivering health services in categorical clinics. 118
The state health department moved swiftly, although reluctantly, to provide support through legislation and administrative approval of the group practice prepayment plan. They sought to reduce the excessive revenue being used for health care. They began to make efforts to stimulate the growth of group practice plans through contracts with other organizations willing to take responsibility for an enrolled population. The governor signed legislation which enabled the state to make a contract with a private organization. On the federal level, a great deal of excitement and interest was generated by the effort of this community to correct some of its own ills. The federal branches of government took strong note of this and pressed forward to spread this idea. The Department of Health, Education, and Welfare acted quickly to prepare enabling guidelines and regulations for other interested organizations. Several bills were introduced into Congress which stipulated incentives for organizations to deliver group practice prepayment plan services to underserved communities such as East Baltimore. President Nixon grasped the group practice prepayment programs idea 1 and referred to the East Baltimore example in some of his discussions concerning his health programs. One of the strongest impacts of the EBCC was on the Johns Hopkins Medical Institutions. The idea of having such a service program received strong backing and the commitment of the university shook that organization to its foundations. The medical institutions did a complete turnaround in reordering their priorities from education and research to provision of services. Previously, little attention had been paid to how services were rendered at the medical institutions. There was extreme resistance to this movement that created strong political enemies for the administrators of the hospital and the medical school. Involvement of the university faculty was made only with great reluctance, although many faculty members became great supporters of the programs and made strong commitments to its success. The university began to realize its role within the East Baltimore community and the necessity for involvement. It also began to deal with its internal
attitude toward racism, poverty groups, economic advancement, etc. As a result of the university commitment to this program, previous barriers of hostility between the community and the medical institutions began to crumble. They began to understand that they were mutually dependent, with mutual goals, objectives, and needs for support and they learned to work together toward achievement of these goals. CGHF initially involved the community in many of its activities and, therefore, had a profound effect on uplifting the hopes of community residents that something would be done. However, there was little or no spinoff on community development as a result of the formation of the health center. No supportive nor allied organizations were formed, perhaps due, in part, to the existence of the strong and active Community Action Agency which had spawned the neighborhood health center. As time progressed, a great deal of jealousy developed between the health center and the CAA, resulting in a decrease in the effectiveness of the health center as a rallying point and in the effectiveness of the CAA in provoking social change. Eventually the CAA refused to support the efforts of the health center in obtaining land for its new building and to organize community support for health center programs. The impact of the health center on the city health department was profound. As a result of the concept of providing comprehensive care for a patient under one roof as opposed to the categorical approach, the health department established a network of comprehensive neighborhood health centers. These health centers provided primary, comprehensive care for the entire family in many many locations throughout the city, replacing the categorical well-baby, chest, and immunization clinics, etc. On the federal level, the center was somewhat effective in influencing the funding agency to modify its policies. Although the funding agency advocated community involvement and responsiveness to community needs by the center personnel, it did not foster such a policy by the administrators of the health centers. The needs of center administrators were not met by the funding agencies. Indeed, calls for help fell on- unsympathetic ears and pro-
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voked terse memos and directives. Through the efforts of the Washington-based center, the funding agency began to modify its stance on sending directives. OEO started to allow some latitude in how center staffs were to be organized and facilities laid out, and began to respond to the problems of the health center personnel, rather than dictating policies without their input. 1 2 The university involved with the health center ignored the plans for the health center operation. Little or no faculty involvement or support was evident until the center became successful in the delivery of services. Once the center was established, the university faculty sought to use this as a training ground for medical students and house officers. The university, however, was forced by its students to involve itself in the activities of the center and develop programs for medical students and house staff in community medicine. This represented a change from the purely clinical teaching curriculum previously in existence. Students demanded that they be permitted to observe center operations and consumer involvement in medical
affairs, and they formed a committee to enable them to have a meaningful role in the health center. In both programs, then, consumers were able to have considerable influence in the organization and operation of the centers. EBCC appears to have been more effective in involving and educating the consumer and in making his voice heard in decision making. Consumer involvement in important board functions seems to be the key to success. Since they went beyond the immediate health-care delivery system into housing, economic development, and politics, EBCC consumers clearly reached more people and provoked more social change than did the more narrowly based OEO center in Washington. EBCC is a model for a national campaign and a federal policy, whereas the comprehensive-care model in Washington was not found worthy of duplication and is now attempting to convert its operation to the prepayment model represented in East Baltimore. Whether the EBCC model of consumer involvement can be replicated is a question for the next decade's study.
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Literature Cited 1. Kramer RM: Participation of the Poor. Englewood Cliffs, NJ, Prentice-Hall, 1966, p 2 2. Moynihan DP: Maximum Feasible Misunderstanding: Community Action in the War on Poverty. New York, Free Press, 1969, pp 167-205 3. Bellin LE: Changing composition of voluntary hospital boards - an inevitable prospect for the 1970s. HSMHA Health Rep 86(8): 674-681, 1971 4. Arnstein S: A ladder of citizen participation. J Am Inst Planning 35: 216-224, 1969 5. The Johns Hopkins Medical Institutions: Office of Health-Care Programs - A Three Year Summary: 1969-1971. Baltimore, 1971, pp 6-7, 41-47 6. Arnstein S: Community control as a factor of health-care innovation: The East Baltimore experience. Report to Model Cities Contract HSM-1 1 0-70-353, Baltimore, 1971 7. US Department of Health, Education, and Welfare, Office of Economic Opportunity: Guidelines for Consumer Participation. Washington, DC, US Government Printing Office, 1968, p 17 8. Partridge K: Consu mer participation, thesis. Johns Hopkins School of Hygiene and Public Health, Baltimore, 1972 9. Wolfe S: Primary health care for the poor in the United States and Canada. Int J Health Serv 2: 21 7-228, 1972 10. Glogow E: Community participation and sharing in control of public health services. Health Serv Rep 88: 442-448, 1973 11. Nixon RM: Message on health and hospitalization (H Doc No 92-49), referred to 92d US Congress, 1st Sess, February 18, 1971. In Congressional Record, vol 117, pt 3. Washington DC, US Government Printing Office, 1971, pp 3015-3021 12. Sparer G, Dines G, Smith D: Consu mer participation in OEO-assisted neighborhood health centers. Am J Public Health 60(6): 1099-1102, 1972
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