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Community Oriented Primary Care: Lessons Learner! in Three Decades Kurt W. Deaschie It is my goal in this paper to review firsthand experience with four quite diverse community oriented primary care practices in an effort to examine some of the common problems and summarize the lessons learned. How- ever diverse, all were academically nurtured but not directly "owned and operated" by the academic establishment. Three of these practices were domestically initiated: the first on the Navajo Indian Reservation; the sec- ond in Martin County in Kentucky's Appalachian area; the third in the inner-city East Harlem section of New York City; and the fourth, now in the early development stage, in the Dominican Republic is international. These efforts span 27 years of work in these four different areas and, together, they illustrate many of the principles of community oriented primary care (COPC). Before describing the four COPC models, terminology essential to the understanding of the topic needs to be defined. I use the simple definition for COPC as stated in the report "Community Responsive Practic~New Directions for Primary Care," approved by NAS for Program Initiation Funding dated May 8, 1981.i As presented in this document, COPC de- notes a practice that is oriented to serve the particular needs of defined population. It was pointed out in this report that COPC usually refers to practices responsive to the needs of the underserved and isolated com- munities but that the "notion of community responsiveness of a medical practice is by no means limited tO these areas." It was also emphasized that the medical practice that we are discussing is largely, if not exclusively, addressed to primary care. 6

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Lessons Learned in Three Decades 7 The term "defined population" requires further comment. In the NAS planning document, Madison and Shenkin are quoted regarding their def- inition of a community-responsive practiced To paraphrase, their definition of community can include geographic, social, and occupational parameters, or merely members of a physician's practice. This latter so-called "com- munity" is a self-selected group of people who have elected to use a par- ticular medical practice. Such a group, in my view, represents a "constitu- ency" rather than a defined population. To the extent that the constituency represents the total community, they may operationally be considered a subgroup of the community at large. Most private practices in this country are addressing a "constituency" rather than a community in the more epi- demiologic sense. Clarification is also neded for the label "community responsive." Again, I refer to the Madison-Shenkin discussions of community-responsive prac- tices in which some specific attributes of"community responsiveness" are presented. Such a practice "assumes a larger than ordinary share of re- sponsibility for safeguarding the health of the community, and . . . follows through on this responsibility by taking action beyond the traditional mode of treating the complaints and problems of patients as they approach the practice one by one." Over the years I have defined that characteristic of primary care as the "practice of community medicine" that is to say identifying and solving health problems in groups of people (or commu- nities). These activities can include aspects of public health and preventive medicine, as can be appropriately integrated into the primary care practice. Having established the basic vocabulary and definition of COPC, I will now present the four model practices that I have participated in over the past 27 years. CASE #1: 1955-1960 Navajo Lydia TribelUSPHS-IHSlCornell University Medical Center In 1955, the U.S. Congress transferred responsibility for Indian health from the Bureau of Indian Affairs, Department of the Interior, to the U.S. Public Health Service (USPHS), Department of Health, Education, and Welfare. This COPC practice emerged from the desire of the USPHS Indian Health Service (IHS) and the Navajo tribal government to obtain help from a university academic medical center to improve the Navajo health care sys- tem and make it more responsive to the needs of the Navajo nation. Expectations ran high for quantum jumps in health care improvements. Earlier in the 1950s, Dr. Walsh McDermott and his colleagues at Cornell Medical Center in New York had introduced a highly successful tuber- culosis chemotherapy program on the Navajo Indian Reservation.3 Because

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8 Lessons Learned in Three Decades of this experience, McDermott and his associates at Cornell University- New York Hospital were the logical academic team to assist the federal government and the Navajo tribe in establishing a primary care health model responsive to the needs of his underserved Indian population. The Cornell group accepted this challenging opportunity tO collaborate with the USPHS and the tribe.4~7 Time does not permit a full description of the exciting 5 years of this project. It was primarily a demonstration and research model, but there are critical lessons learned from that experience that are applicable to the COPC movement today. The sociocultural, economic, geographic, and medical problems seen on the Navajo reservation in 1955 were similar to the health conditions in many of the underdeveloped countries around the world. Additionally, the Cornell team responded to a"felt need," that is, the Navajo tribe and the USPHS both were enthusiastic about inviting a pilot field health care demonstration. To provide technical assistance, it is essential to have community participation and active involvement, thus ensuring a close communication between the health providers and the community served. In 1955, the Navajo tribal population was estimated at 70,000 people, living in rural isolation in an area of 25,000 square miles, including parts of Arizona, New Mexico, and Utah. The Cornell team in consultation with the tribe and with the approval of the USPHS-IHS officials, chose a clinic site in the tribal political district known as the Many Farms-Rough Rock chapter. This community of approximately 2,000 population was considered "representative" of the Navajo tribe as a whole and therefore the type of defined population that might serve as an indicator for health problems and services across the entire reservation. However, it should be noted that the Tribal Health Committee was the primary decision maker with respect to the selection of a pro ject site. The Cornell group then presented the purpose of the project tO a community meeting at the Many Farms-Rough Rock Chapter House to give the community the prerogative of accepting or rejecting the health care demonstration project proposal. This was just the beginning of a series of reports and open discussions with the local com- munity with more formal annual reports given tO the tribal council. The sine qua non of a COPC practice is the intimate relationship of the health service team with the population served. For example, a commu- nications barrier existed, as the Navajos maintained their traditional culture and spoke a difficult, complex language that is rarely mastered by non- Navajos. This barrier was tackled from two sides. The Navajo community health workers were given extensive education and training in medical interpretation, through the team efforts of a Navajo nurse and linguistic experts, with frequent monitoring of ongoing medical interpretation prob- lems. The non-Navajo health professionals improved their communications by learning Navajo culture, customs, and beliefs. For example, the clinic

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Lessons Learned in Three Decades 9 was not opened until the local medicine men "blessed" the building in a special ceremony. Cultural gaps can be mitigated. In-depth knowledge of the cultural and language differences can help the health professionals strengthen the overall health care service program. Certainly, the corner- stone for optimum health care in any practice situation is effective and sensitive communication. The Navajo case illustrates this most dramatically. Another aspect of the Cornell Navajo model involved the careful doc- umentation of health and disease problems of the community. In addition to annual census and demographic studies, epidemiologic surveys, analyses of patient care utilization, and nutrition studies, a variety of other relevant studies were carried out periodically.8 It was soon documented that the primary care problems seen in the clinic were, for the most part, preventable and that overall improvement in the health picture would require major work in health education and health promotion as well as improvement in socioeconomic levels. The extensive academic field research conducted in the Navajo example was considered vital to the tribal/USPHS health planners. It would be a great asset to every COPC practice to have basic demographic and health information on its defined population. It must, however, be of a quality that could form the basis of evaluating the impact of their services on health levels of the community. In the Navajo project, great reliance was placed on the community health worker. These were bilingual Navajo men and women, trained to the level of a field nurse assistanta kind of public health, licensed practical nurse. These individuals usually had less than a full high school education and they represented a readily available pool of tribal manpower. Despite the doc- umented success of the community health worker in this project and its extraordinary capacity tO narrow the cross-cultural gap, the USPHS did not immediately follow through with this innovative health manpower model. Critical lessons are learned here too. The most apparent reason for this lack of government interest was the threat it posed tO the nursing hierarchy in the USPHS-IHS program at that time. As an aside, the USPHS-IHS tO this day has not established a medical interpreter school, course, or program. On the other hand, a medicine man school was established in the Rough Rock community. This is funded by an NIH grant for the next 5 years. The new hospital at Chinle, Arizona, has a hogan temple built as a "lean- to" for providing traditional Navajo ceremonies. CASE #2: 1962-19GS Martin County, Appalachia Martin County, a rural Appalachian community in Kentucky, was consid- ered in the early 1960s tO be one of the poorest and most medically

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10 LESSO Lessons Leaded in Three Decades underserved communities in Kentucky. Tuberculosis was considered by the community leaders as the major health problem. The Kentucky State Health Department and Kentucky Tuberculosis Association, in collaboration with local leadership, requested a university-sponsored pilot demonstration in tuberculosis eradication on a countywide basis. The University of Kentucky Medical Center (UKMC) agreed to provide the technical assistance for this collaborative project.9 Fortuitously, the TB project had included a complete census and socio- economic survey of the entire community as part of the house-to-house tuberculin testing program. The USPHS temporarily assigned four physi- cians to Martin County to help us conduct clinical examinations on a 25 percent sample of households, thus establishing a baseline for the health and disease problems of this defined target population. On completion of this tuberculosis project, the community sought help from the UKMC in establishing a modern primary care practice program.~ They obtained a federal grant to construct a clinic building. A University of Kentucky Medical School graduate, born and raised in the county adjacent to Martin County, had worked with the TB eradication team during his junior and senior years of medical school. He was eager to return to Martin County as a family physician. His residency training in primary care and fellowship in community medicine made him an ideal candidate for directing the Martin County community primary care practice. He rapidly put together a health team recruited from the local community and put into place community health workers and a medical technician. He was also fortunate in finding a nurse practitioner. He was later appointed health officer in addition to his fee-for-service clinical practice. Moreover, he had frequent visits from UKMC faculty, who consulted with him on difficult health problems. During the first few years of the life of this Martin County practice, the future of this program seemed bright. One would have anticipated that such a comprehensive and responsive practice of this kind might become deeply rooted and "institutionalized." Unfortunately this has not been the outcome. Martin County has been the center of a coal boom. Several physicians have moved into the county. Patients who formerly were satisfied with the nurse practitioner care in the community practice transferred to the practices in which the physician was the primary caretaker. Federal funds to support community health workers dried up. The state has now reorganized the public health departments into 15 regions, and the local county health departments are being dismantled. The family physician conducts his practice in the community clinic with the help of one clerk. It would be unfair of me to try to ascertain all the factors that have reduced the COPC practice apparently successful and effec- tive to a traditional "bare-bones" solo practice. Undoubtedly the past 15

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Lessons Learned in Three Decades 11 years have produced enormous changes in socioeconomic life in Martin County and a dramatic reduction of financial support for social health ser- vices. This case does, however, serve to demonstrate that a major change in the local community and the shift in national health policy can produce major distortions in COPC. The Martin County case started with many postive features also found in the Navajo project; yet, in the face of altered community conditions the idyllic COPC could not be sustained. Was it the lack of ongoing community involvement and participation in Martin County? Was it the broader socioeconomic and political conditions? Or was the exodus of the original community medicine faculty from the UKMC the problem? I can only speculate as tO what factor or factors produced the fatal flaw in this COPC practice. CASE #3: 1970-Present The Boriken Neighborhood Health Center, East Harlem, New York Mount Sinai School of Medicine became operational in 1968. The founders of the school were committed from the very beginning to provide technical assistance to the surrounding East Harlem community. East Harlem, often referred to as Spanish Harlem, had a medically underserved population of 150,000: 45 percent Puerto Rican, 35 percent black, and 20 percent white and other (most Latin American and Italian). East Harlem shares all the adverse health indices, crime rates, substandard housing, unemployment, and other unfavorable characteristics of the inner city. Again, as in the previous cases, the principle of "doing with" rather than "doing for" was invoked. Technical assistance and model building became the academic service to the community. An initial community survey of 2 percent random selection of households indicated that, among other health issues, infant and child health was a top priority.~ The East Harlem Tenants Council (EHTC), a local Puerto Rican organ- ization committed to housing since the late sixties, broadened their interests in the seventies to include the delivery of health services. Thus, in June 1974 the EHTC now known as the East Harlem Council for Human Services requested technical assistance from Mount Sinai in the devel- opment of a primary care program that would serve families in their area of influence. The Boriken Neighborhood Health Center (BNHC), a full- scale neighborhood health center, was planned and opened by the com- munity organization in 1975 with technical assistance from the medical school and financed by the USPHS (314e monies. Since 1978 a satellite unit of this center was opened with support from New York State.

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12 Lessons Learned in Three Decades The catchment area of these two programs is all of East Harlem with the northern sector of this district as principal target area. The organization and staffing pattern of both centers are typical of community owned and op- erated neighborhood health centers. A lay governing board of directors assumes policy responsibility for the BNHC, and a pro ject director conducts day-to-day management, reporting to the board. A medical director re- porting directly to the project director is responsible for the coordination of professional services. The staffing emphasis is placed on nurse practi- tioners and community health workers. A full complement of physicians, dentists, nurse practitioners, dental hygienists, psychiatric social workers, health educators, nutritionist, nurse midwives, and appropriate M.D.-spe- cialist/consultants round out the professional health care team. Community health workers bridge the gap between the health professionals and the patients and their families. They also serve a marketing function by helping the community residents learn how to use the health center. At present there are 16,000 registered patients (13 percent of East Har- lem's population) that generate approximately 40,000 annual visits. The clinic has hospital linkages to the three hospitals situated in East Harlem: North General, Metropolitan, and Mount Sinai. Although the persons seek- ing care at the BNHC and satellite are self-selected, the demographic and socioeconomic characteristics of the registered population resemble the community in the entire catchment area. Most of the registered persons are Medicaid-Medicare-eligible and medically indigent the so-called "near poor." The health and disease problems are essentially those identified by existing health agencies and corroborated by our own surveys and segmental health care studies. Overall, the community governed and managed health center has fulfilled expectations of an urban, inner-city COPC practice. Given continued good leadership from the community organization and strong financial support from federal, state, and city sources, the future would seem to be reasonably secure. CASE #4: 1980-Present La Romana, Dominican Republic In the spring of 1980, an official of the Gulf Western Corporation, a multinational conglomerate, asked the dean of Mount Sinai Medical School for technical assistance in planning the improvement of an urban and rural health program that already existed for their employees and dependents living in the eastern region of the Dominican Republic. The need to improve the health services for approximately 100,000 persons, particularly in the

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Lessons Learned in Three Decades 13 three rural provinces surrounding the company town of La Romana, was considered to be a high social goal for the corporation. A 5-year contract was drawn up between the Department of Community Medicine, Mount Sinai Medical School, and Gulf Western Americas Corporation, and tech- nical assistance was initiated on October 1, 1980. The Dominican Republic occupies the eastern two-thirds of the Island of Santo Domingo (Hispaniola), which it shares with Haiti. The 1980 total population was estimated at approximately 6,000,000. A Spanish-speaking nation, the Dominican Republic is essentially an agricultural economy with great dependence on sugar as itS principal export product. Low levels of literacy and lagging socioeconomic development contribute to the poor health conditions.~3 The health and disease patterns of the Dominican Republic are the very prototype of a developing country: high fertility and birth rates, high infant mortality, deaths and morbidity attributable to infectious diseases, and nu- tritional deficiencies. There are many criticisms of the quality of care in the hospitals and rural health clinics. The poor quality and uneven distribution of health manpower has been another factor in contributing to the low levels of health care in the countryside. The Gulf Western business operation in La Romana is typical of multi- national enterprises in other countries where the corporation assumes re- sponsibility for health care services to the employees. Therefore, the in- volvement of academia in providing technical assistance in this Caribbean setting provides yet another challenge in constructing a COPC delivery system. Certainly our past experience in rural and urban health settings in the United States offered the Mount Sinai academic group a basis for developing this private enterprise COPC model. Although we are only into the second year of this Caribbean project, a series of steps have been taken that parallel the approach used in the previous domestic ventures. Identification of local Dominicans who provide planning and reorganization leadership was deemed as top priority. An industrial engineer and a physician were identified as such. The current system in La Romana was analyzed by them with the technical assistance from our Mount Sinai bilingual faculty team. During the first year the physician was given epidemiologic and management science education with training on site as well as at Mount Sinai. Formal tutoring utilizing the Domincan Republic's own health planning activity as a practicum was most effective in upgrading his knowledge and planning skills. This physician is highly respected and seen as a moving force in the improvement of the rural health system. His views on health focus on prevention, health pro- motion, and comprehensive primary care. In addition, a general practitioner

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14 Lessons Learned in Three Decades from the area has been trained on the basic principles of clinical epide- miology. Already several surveys have been conducted that document the health problem in the community. This second year (1981-1982) has focused on the development of the first of seven rural health centers that will serve a population of approxi- mately 20,000. This center will also serve as a site for demonstration and training of personnel for the other six. While the building of this health center is being completed, the identification and training of the health manpower to staff the center was supervised by the Dominican physician. When the clinic opens the locally trained staff will be in place, including a young general practitioner who grew up in that community. The data col- lection reporting and referral systems have been carefully planned and are ready to function. In addition to technical assistance in planning, small teams of Mount Sinai bilingual clinical faculty have made intermittent visits to La Romana and have conducted consultations, lectures, seminars, and workshops on the common disease problems selected by the local practitioners. The education and training effort has included administrators, nurses, and community workers. During this early phase of the program another component is technical assistance for revamping the hospital at La Romana as a general hospital for secondary care. The medical director of the hospital, at his request, is presently receiving on-site intensive tutorial instruction, particularly in health planning and health care organization. The evolution of the plan thus comes out of local staff effort with the technical assistance of the Mount Sinai health planners. It is too early tO say that the La Romana health system now being put into place will be the appropriate model for COPC practice. However, if the language and cultural compatibility can be assuredand it seems to beand, if epidemiology and management sciences are appropriately ap- pliedand that seems to be coming alongthen, one begins to have some optimism for the future of this project. Fiscal commitments, of course, will depend on the commitment of the corporation. If it remains a high priority tO engage in social projects in their own enlightened self-interest, then indeed the future support seems solid. International politics, the economics of sugar production, and the usual community factors in the area will un- doubtely influence the outcome of this health care delivery system exper- iment. The four COPC practices reviewed above have many common features. The planning, development, and operational problems were quite similar.

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Lessons Learned in Three Decades 15 Certainly we have learned that the guiding principles in establishing a COPC practice include: and . community participation, bridging the language and cultural differences, ascertainment of the health and disease problems in defined population, . development of a cadre of local community health workers to assist the professional staff in outreach activities. There are obviously many significant barriers to the development of COPC practices. Perhaps at this point in our history the economic con- straints seem most threatening. Steady erosion of the financial subsidies from both the public and private sectors has reduced the support and vitality of these practices. Perhaps at this point in our history the economic con- straints seem most threatening. Steady erosion of the financial subsidies from both the public and private sectors has reduced the support and vitality of these practices. In addition to the question of future public or private sector support of the COPC practices, there are also intrinsic serious man- agerial problems in the operation of these practices. Most physicians have had little or no education or training in the management sciences that affect the practice of medicine. In the education of our medical graduates, the biomedical aspects of medicine dominate the medical centers while man- agement training is simply neglected. The physician in the COPC practice often faces for the first time the preparation of a detailed budget and a variety of federal and state administrative reports. Another problem facing COPC providers involves balancing the profes- sional health provider mix and staff support appropriate for acceptable high- quality care in the center. The physician, nurse-practitioner, doctor-assistant provider mix must be carefully evaluated for optimum efficiency and ef- fectiveness. The risk for possible breach of privacy and confidentiality with a large staff of community health workers has been a problem with some practices. The medicalization of many social health problems requires com- munity health workers to deal with issues with their neighbors. If the doctor suspects child abuse, alcoholism, sexual problems, noting these problems on the patient's chart spreads the risk of a breach in confidentiality to a greater degree than a traditional practice. The emphasis on epidemiologic components of the practice can bring forth the accusation from the community of "research" and "guinea pig" operations suspecting the doctors of using the practice for their own selfish professional goals and advancement. Patients may also resent the assignment

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16 Lessons Learned in Three Decades of medical students and residents to their clinical care. People living in underserved communities are understandably highly sensitized to the pos- siblity of being "used" for medical education and research purposes. Integrating COPC into the existing health care network for the area is yet another issue that must be resolved by persons establishing a COPC practice. COPC cannot operate in isolation but must be linked to effective secondary and tertiary care. The approach to the other health care insti- tutions must be professionally as well as economically appropriate. In my view the challenge is to sustain and to nurture these COPC practices once they are established. The political dynamos within the practice and forces in the local community, as well as broader political, economic, and social changes, all impact on the COPC practices and make them highly vulnerable. It is important to examine the potential of experimenting with the COPC practices in the more affluent sectors of our society. The rising interest in preventive medicine and health promotion among the public might well provide the foundation for an innovative COPC practice. The possible modification of the HMO to a COPC structure would also be an option to consider. We must review the significant barriers affecting the function of the COPCs now in existence and look ahead and anticipate those likely to be encountered by future programs. I am confident that in doing this we will contribute enormously to our understanding of these practices and identify research issues that may help in advancing this pattern of primary care where it is most urgently needed. REFERENCES . The National Academy of Sciences/Institute of Medicine (1981) "Community Responsive Practice" New Directions for Primary Care. Paper Requesting Program Initiation Funding, May 8, Washington, D.C. 2. Madison, D.L., and Shenkin, B.N. (1978) Leadership for Community-Respon- sive Practice. Report to the Bureau of Health Manpower by the Rural Practice Project Team, Chapel Hill, North Carolina. 3. Deuschle, K.W. (1959) Tuberculosis Among the Navajo Research in Cross- Cultural Technological Development in Health. Am. Rev. Resp. Dis. 80~2):200- 06. 4. McDermott, W., Deuschle, K.W., Adair, J., Fulmer, H., and Loughlin, B. (1960) Introducing Modern Medicine in a Navajo Community. Science 181(3395, 3396): 197-205, 280-87. 5. McDermott, W., Deuschle, K.W., and Barnett, C.R.(1972) Health Care Ex- periment at Many Farms. Science 175(4017):23-31. 6. Adair, J., and Deuschle, K.W. (1970) The People's Health: Anthropology and Medicine in a Navajo Community. New York: Appleton-Century-Crofts.

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Lessons Learned in Three Decades 17 7. Deuschle, K.W. (1963) Training and Use of Medical Auxiliaries in a Navajo Community. Public Health Rep. 78(6):461-70. 8. Furcolow, M.L., Shaffer, S.A., and Deuschle, K.W. (1966) Tuberculosis Erad- ication in Theory and Practice. Arch. Environ. Health 12:287-94. 9. Hochstrasser, D.L., Nickerson, G.S., and Deuschle, K.W. (1966) Sociomedical Approaches to Community Health ProgramsCase Report on Pilot Project in Tuberculosis Eradication. Milbank Mem. Fund Q~.44(3):345-59. 10. Johnson, L.A. (1974) The People of East Harlem. Mount Sinai School of Medicine, New York. 11. Deuschle, K.W., and Bosch, A. (1981) The Community Medicine-Primary Care Connection. Isr. }. Med. Sci. 17(2-3):86-91. 12. Merino, R., Rose, D., and Bosch, A. (1981) A Medical School's Involvement in the Development of a Community-Based Health Center. Unpublished paper. 13. Bosch, S.J. (1981) Demographic Characteristics, Living and Health Standards of the Dominican Population. Unpublished paper.

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