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6 Barriers to Research The twentieth century has witnessed unprecedented advances in the ability to diagnose and treat infectious diseases. Yet the discovery of effective chemotherapies and vaccines has not guaranteed success in controlling sexually transmitted infection. For example, although penicillin has been an important and effective part of the campaign against syphilis and gonorrhea for more than 40 years, these sexually transmitted diseases have persisted, and their incidence has risen with the changes that have occurred in sexual mores. Brand (1987) has argued that these diseases pose a complex problem in which the biology of the parasite and of its host interact with a variety of social and environmental factors that cocletermine the pattern of the spread of the disease. Thus, the efficacy of therapies and vaccines can be overwhelmed by social changes for example, the weakening of the link between sex and marriage, changes in patterns of nonmarital sexual behavior, or declines in the use of particular contraceptive methods. Disease prevention, then, calls for more than biomedical tech- nologies. It also requires a sophisticated comprehension of individual and social behavior patterns and the ability to design interventions in accord with that comprehension. This is particularly true for STDs and, as the previous chapters of this report have made clear, for halting the spread of HIV infection. Awareness of the role that the social and behavioral sciences can play in (resigning and im- plementing preventive strategies in health promotion and disease control has increased significantly during the past two decades. In 1979, for example, a committee of the Institute of Medicine that was charged to review principles for health research concluded that 359

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360 ~ IMPEDIMENTS there was a need for a concept of the health sciences "that is much broader than was the view as recently as ten years ago" (IOM/NAS, 1979:25~. It recommen(lecl that approaches that equated health re- search with biomedical research be expanded to recognize the im- portance of the behavioral and social sciences as well as statistics and epidemiologyfor research on disease prevention and health maintenance: "The committee regards this broadened concept as a desirable advance in policy formation, and supports efforts to trans- late this perspective into tangible and adequate support for the full complement of the health sciences" (1979:25~. Writing three years later, the IOM/NAS Steering Committee on Health and Behavior (Hamburg et al., 1982:Chapter 19) echoed these conclusions and urged increased funding, multidisciplinary col- laborative research programs, and a number of other specific actions: increasing the number of behavioral scientists appointed to mecli- cal school faculties, expansion of M.D.-Ph.D. programs to include psychology and sociology, and increased use of behavioral and so- cial scientists on review panels for the National Institutes of Health (NTH). The committee also argued that funding levels for behav- ioral research on health were not commensurate with the available research opportunities: Many substantial opportunities for research do in fact exist. They offer promise of clarifying linkages of health and behavior and the potential of suggesting more effective therapeutic and preventive interventions in the future. This being the case, the present low level of funding of research deserves serious re-examination. It would be tragic to allow a prolonged decline in support at a time of expanding scientific opportunity. (Hamburg et al., 1982:319) In its concluding remarks on the situation that existed in 1982, the committee recognized one significant set of barriers to broader views of health-related research: Prejudices and inherent complexities have presented formidable obstacles to efforts to link biological and behavioral phenomena . . . [but the] practical problems of clinical medicine and public health demand novel conjunctions and open-minded, cooperative explorations.... (1982:321-322) Since 1982 some progress has been made in enhancing the role of the social and behavioral sciences in medical research ant! practice. There has been, for example, an increase in the number of social and behavioral scientists on the faculties of schools of medicine and

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BARRIERS TO RESEARCH ~ 361 1.0 0.9 078 o ._ 0~7 0.5 / . ~ Current dollars', \ Constant dollars , 'N 1 1 1 1 1 1 1 1 1 1 1 1 1972 74 76 78 80 82 84 86 Year FIGURE 6-la Trends in federal support for behavioral and social science research (in current and constant 1987 dollars). Source data are from the National Science Foundation's Federal Farads for Research and Development, cited in Gerstein and colleagues (1988:252~. public health.) Federal funding for research in the behavioral and social sciences, however, has declined. As Figure 6- la illustrates, the funding available for behavioral and social science research (of all types) in 1987 was 25 percent less than in 1972 in constant dollar terms (i.e., adjusting for inflation). This decline in federal support was not due to an across-the-board cut in federal support for scientific research: federal support for other research increased by 36 percent during this same period (Figure 6-lb). It should also be noted (as indicates! by the dotter! line in Figure 6-lb) that funding of behavioral ant! social research of all types has been a barely visible fraction of the federal research budget in every year between 1972 and 1987. The key role of prevention in the control of the AIDS epidemic has led to a renewed appreciation of the need for behavioral and social research. As early as 1985, the Office of Technology Assessment iTabulations from the biennial Survey of Doctorate Recipients conducted by the Na- tional Research Council's Office of Scientific and Engineering Personnel indicate that the estimated number of behavioral and social sciences Ph.D.s employed in medical schools increased steadily from 2,229 in 1977 to 4,730 in 1985 and remained at this level (4,694) in 1987. It is the committee's impression that a parallel increase occurred in schools of public health, although the available data do not permit estimates to be made of the number of doctoral recipients employed in these schools.

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362 ~ 18 _ 16 _ 14 O 1 2 ._ ._ m 10 6 IMPEDIMENTS Constant dollars 4 - - - $1.1 Billion -to t - t t t t ~ ~ ~ HI t 1972 74 76 78 80 82 84 86 Year FIGURE 6-lb Trends in federal support for other research (in current and constant 1987 dollars). Source data are from the National Science Foundation's Federal Funds for Research and Development, cited in Gerstein and colleagues (1988:252~. questioned whether adequate funds were being devoted to behavioral research on AIDS prevention strategies: By directive tof the Department of Health and Human Servicesi, the response to AIDS has concentrated on research into the bi- ology of AIDS. Psychological and social factors related to AIDS, the service needs of AIDS patients, and public education and prevention have not been considered funding priorities.... The distribution of resources to activities not directly involving the etiologic agent remains an issue. Of particular importance is the question of whether sufficient resources are being devoted to the investigation of factors affecting the transmissibility of AIDS, treatment, public education, and prevention. (1985:31) One year later, the IOM/NAS Committee on a National Strategy for AIDS also noted the crucial role to be played by behavioral interventions in controlling the AIDS epidemic, and it discussed the consequences of inadequate funding for social and behavioral research: . . . the knowledge base in the behavioral and social sciences needed to design approaches to encourage behavioral change is more rudimentary because of chronic inadequate funding. This lack of behavioral and social science research generates some of

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BARRIERS TO RESEARCH ~ 363 the most important and immediate questions surrounding the epidemic. (IOM/NAS, 1986:230-231) Our own committee, which is composed largely of behavioral ant! social scientists, agrees with the conclusion previously reached by our biomedical colleagues. We have not, however, taken it as our task to assess the relative funding allocated to biomedical versus behavioral research. The committee observes, however, that a large number of serious and pressing needs for behavioral and social research have not been met because of a lack of funding or (in cases such as sex research) because of the hesitancy of federal health officials to support research that might provoke congressional criticisms This history of unfuncled research needs has hobbled attempts to understand! the AIDS epidemic. The preceding chapters have described some of these needs; two examples deserve reiteration: . The AIDS epidemic has created a great demand for data on the prevalence and patterns of {V drug use in the United States. Lack of funding, however, has forced the closing of the data archive that was established to catalog and store data from past research studies. . In 1987, statisticians began to develop and apply meth- ods that use counts of AIDS cases to infer the spread of HIV infection. These methods require reliable informa- tion about the distribution of incubation periods from HIV infection to the diagnosis of AIDS (see Chapter 1~. Yet as a result of funding limitations and the cost of tracing participants, it has not been possible to follow all men with Tong-term HIV infection in the cohort study that has enrolled the largest number of men infected during the first stage of the epidemic. In the preceding chapters of this report, the committee has recom- mencled the funding of specific research efforts to better understand the behaviors that transmit HIV infection. In addition to removing the barriers imposed by a history of underfunding of basic social and behavioral research, the commit- tee believes that current AIDS research efforts are often hindered by clearance procedures imposed by the Office of Management and Budget (OMB) on the collection of survey data. These clearance procedures (mandated by the Paperwork Reduction Act of 1980) 2The National Institute of Mental Health, for example, was awarded a "Golden Fleece Award" in April 1978 by Senator William Proxmire for funding a study of behavioral and social relationships in a Peruvian brothel.

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364 ~ IMPEDIMENTS can impose delays of several months between the time a researcher prepares a research design and the time the content and wording of the survey form are approved by OMB. This procedure not only re- tards research but may discourage careful pilot testing because each new version of a survey questionnaire requires clearance if it is to be administered to more than nine persons. Given the urgent unmet research needs related to AIDS, ways to speed up research must be found. The committee-recommencIs that serious consiclera- tion be given to exempting research on HIV infection and AIDS from the requirements of the Paperwork Reduction Act. COLLABORATION IN RESEARCH Equally as important as the removal of barriers to social and behav- ioral research on AIDS is the facilitation of contact between all of the relevant researchers in the field. Interdisciplinary collaboration is crucial to an understanding of the complex set of biological, psycho- Togical, and social problems that affect the AIDS epidemic. Research on the dynamics of HIV transmission, for example, has come to in- volve not only experts in virology and infectious disease but experts in survey measurement and sample design. Just as it has been essential for AIDS researchers to collaborate across the boundaries of unfamiliar disciplines, so, too, has it been vi- tal to develop collaborations between scientists and the communities with which they work. Indeed, it would appear that much of the best behavioral and statistical research on AIDS has resulted from the joint efforts of university scientists, government agencies (at all lev- els), and organizations rooted in the communities that have borne the brunt of the AIDS epidemic. Although these collaborations have not always been easy to arrange or free from conflict, the practical and scientific payoffs have been substantial. Research aimed at the cle- sign, implementation, and evaluation of AIDS interventions depencls in many important ways on the organizations that can represent and reach the communities that are the targets for those interventions. Beyond providing entry into these communities, collaboration with organizations and individuals in the community can enrich the re- search process and improve the chances that the interventions will be effective. To help foster this crucial collaboration, the committee be- lieves that, to the maximum extent possible, talented, well-trained, and dedicated workers should be recruited from within the communi- ties in which interventions will be conducted. These workers should

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BARRIERS TO RESEARCH ~ 365 be involved in decision making at all levels, from central coordination and funding to local outreach and education. Attempts to break down social barriers may sometimes be more difficult than arranging collaborations across the boundaries of aca- clemic specialities. Differences in social origins, economic status, or life-style may sometimes lead to misunderstandings on both sides. Yet despite such misunderstandings, the differences that can at times make these collaborations difficult also make them indispensable. Ef- forts to design and implement effective AIDS education without the collaboration of local communities will only multiply these misun- clerstandings. The committee recommencis that intervention programs at all levels increase the involvement of minority researchers and minority health care workers to assist in reaching and involving the black, Hispanic, and gay commu- nities. Collaboration can take many forms, and unfortunately, some of those forms may amount to little more than "window dressing." Communities may be "involved," for example, by appointing com- munity representatives to consult with medical ant! behavioral scien- tists who are designing interventions for these communities. When convened in good faith, such groups may help to improve the in- terventions. Their potential influence is limited, however, by the time group members are able to donate to this activity, their under- standing of the research process, and the receptivity of the scientists involved. Obviously, when such groups are convened to placate com- munity activists or to satisfy the requirements of a federal contract, the prospects are bleak that the group will contribute to improving the intervention. The history of collaboration between communities and research- ers has been quite mixed. It is claimed, for example, that poor com- munication between public health officials and the gay community impeded early prevention efforts (ShiTts, 1987~. As "outsiders," pub- lic health officials were sometimes unaware of the behavioral patterns, social habits, and political sensitivities that required consideration in planning intervention strategies. On the positive side, the committee notes that a number of creative arrangements have been developer] to foster collaboration through the multidisciplinary AIDS research cen- ters established by the National Institute of Mental Health (NIMH). For example, in San Fiancisco, academic research groups have es- tablished strong linkages with institutions in the black, Hispanic, and gay communities. These institutional connections have been strengthened in turn by the recruitment from those communities

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366 ~ IMPEDIMENTS of physicians and behavioral scientists who were working in service delivery positions. These indivicluals have been invited to work on research projects in collaboration with the AIDS center at the Uni- versity of California at San Ffancisco (UCSF). Besides providing the UCSF research teams with colleagues familiar with and familiar to the community, these Arrangements will ultimately increase the cadre of minority scientists skilled in AIDS research. A key ingredient in UCSF's ability to forge these links has been the university's flexibility regarding appointment policies and its willingness to appoint minority-scientists with service delivery back- grouncis in the community to staff positions equivalent to those of research scientists recruited from academia. So, for example, UCSF was able to appoint a talented black female physician without a re- search background in AIDS to the junior faculty to work on AIDS prevention research. Besides helping to blur the distinctions between community service and academic research, faculty appointments for talentecl service providers may be the sine qua non for their par- ticipation in research. Many of these practitioners have family and other financial obligations that preclude their acceptance of positions carrying typical postdoctoral stipends. UCSF's ability to make such appointments has been assisted by encouragement from responsible NIMH staff and by the funding NIMH provides for the university's AIDS activities. The committee believes that continued attention needs to be paid to fostering such innovative institutional arrange- ments. In addition, the collaborative efforts begun with federal support should be sustained. Much of the required behavioral and social re- search on AIDS prevention requires large multidisciplinary teams of scientists with close working relationships with many of the differ- ent communities in which interventions must be conclucted. Recent initiatives, particularly those of NIMH, have been instrumental in forming such multidisciplinary teams in cities that are current foci of the AIDS epidemic. The special funding mechanisms used to support the AIDS cen- ters are an important complement to more traditional grant-making procedures, and they have stimulated interesting and innovative col- laborative research. Moreover, such arrangements have the potential for rapidly enlarging the pool of talented! senior AIDS investigators by bringing established scientists into this research area. The commit- tee believes that it would be a serious mistake to curtail funding for these new initiatives in favor of more traditional means of research.

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BARRIERS TO RESEARCH ~ 367 Funcling strategies that rely entirely on unsolicited grant mecha- nisms supporting individual or small groups of researchers at work on narrowly focused topics are unlikely to stimulate the wide range of needed AIDS research in a reasonable period of time. The commit- tee recommends that support of multidisciplinary centers for research on AIDS prevention be viewed as a long-term com- mitment to allow sustained collaborative efforts, including valuable prospective studies. FEDERAL RESEARCH PERSONNEL In addition to the need for research funding and increased colIabo- ration, there is a crucial need to enlarge the behavioral and social science staff of the federal agencies charged with formulating ant! co- ordinating the national response to the epiclem~c. As the lead agency for AIDS prevention ant! surveillance activities, CDC has struggled mightily to respond to this important charge; yet organizational and staffing constraints have compromised its ability to do so. At the heart of CDC's traditional mode of infectious disease control is the rapid location of disease, followed by treatment, vac- cination, or isolation to prevent its spread. With AIDS, however, there is neither a treatment nor a vaccine, and isolation or quar- antine of HIV-infectec3 individuals is inappropriate, given that the spread of the disease does not occur through chance or casual inter- actions. Thus, CDC's traditional mode of disease control does not fit the neecis of the AIDS epidemic, and the agency has had to evolve rapidly to mount a prevention strategy based on behavioral change and education. When the AIDS epidemic began, CDC employed fewer than 40 Ph.D.-level behavioral scientists, and the agency had limitecl connec- tions with the behavioral science community. CDC thus lacked the organizational and research infrastructure to appreciate the role of the behavioral sciences in disease prevention ant! has hacl to build bridges to the behavioral research community in order to formu- late reasonable approaches in its response to the epidemic. Creating an appropriate behavioral and social science infrastructure will take time; it will also require the continuing attention of CDC's senior management to ensure that there is an appropriate increase in staff trained in the relevant social and behavioral sciences. In this regard, the committee notes that it would be desirable to broaden the pattern of recruitment for CDC's Epidemiologic Tn- telligence Service (ENS) to include a greater number of behavioral

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368 ~ IMPEDIMENTS TABLE 6-1 Persons Trained Between 1951 and 1987 by CDC's Epidemiologic Intelligence Service, by Profession Scientific Field Number Trained Selected categories of biomedical scientists Physicians Veterinarians Epidemiologists Microbiologists Dentists All statisticians and social scientists Statisticians Anthropologists Demographers Sociologists Total 1,318 103 40 11 s 44 s 4 2 1,570 SOURCE: CDC (1987). and social scientists. The ElS provides broad training in epidemic surveillance and control and is an important source of trained person- nel for surveillance and public health activities. Since 1951 the ElS has trained over 1,500 individuals, including 1,300 physicians, but it has trainee! only 11 social scientists (Table 6-1~. The involvement of more such scientists might bring to the agency social and behavioral research skills that are needled to complement the biomedical skills of physicians and other biological scientists in disease prevention. It could also broaden the scope of the training experience. Finally, it might foster the clevelopment of collegial relationships among in- clividuals from different research backgrounds that could serve as a catalyst for future collaborative efforts or as an entry into an infor- mational network in another discipline. In this regard, the committee would emphasize that the staffing of the ElS is but a minor (and rather specialized) example of CDC's needs. The committee notes that CDC is presently managing a portfolio of more than $150 million in behavioral research and in- tervention programs with a small, severely overextended cadre of persons trained in relevant disciplines. Of approximately 4,500 em- ployees at CDC, fewer than 40 are Ph.D.-leve] behavioral and social scientists (and only a fraction of these are working in areas related to AIDS). Mom the beginning of the AIDS epidemic until the spring

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BARRIERS TO RESEARCH ~ 369 of 198S, only one behavioral scientist was added to CDC's staff to work full-time on AIDS. Immecliate Needs The committee believes there is a pressing need to expand sub- stantially the cadre of behavioral, social, and statistical scientists working in the area of AIDS research within agencies of the federal government. The committee offers three recommendations concern- ing specific staff needs and one suggestion as to how these neecis could be met in a timely and flexible fashion. First, the committee recommends that the number of trained behavioral and social scientists employed in AIDS- relatec! activities at fecleral agencies responsible for prevent- ing the spread of HIV infection be substantially increased. Next, the committee encourages a consideration of further expertise in the areas of survey sampling and design. As detailed in Chapter 1, survey data will result in a better product if the surveys are planned and conducted with more timely and greater input from individuals with expertise in relevant fields. At present, the CDC AIDS pro- gram does not employ a sampling statistician; as of May 24, INS, it employed only four Ph.D.-level statisticians in its Statistics and Data Management Branch. The recent organizational move of the National Center for Health Statistics (NCHS) to CDC could provide some of the needed expertise. The role played by NCHS staff has been constrained, however, by the agency's incomplete integration into CDC's AIDS activities. The committee recommends that the CDC AIDS program increase its staff of persons knowI- ecigeable about survey sampling and survey design, ant} that it exploit the methodological expertise of the National Cen- ter for Health Statistics. Finally, the committee notes that, often, educational activities undertaken or supported by CDC and other federal agencies have not undergone rigorous evaluation; in some cases in which evalua- tions have been done, uninformative criteria were used to measure the effects of the program. Examples of such criteria include mea- suring the impact of educational efforts in terms of the numbers of brochures distributed or assessing changes in knowledge in what is presumed to be the target audience with little or no information being collected on risk-associated behavior. In many instances, these oversights or omissions reflect the inexperience of those conducting the evaluation. The committee recommends that, in addition

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370 ~ IMPEDIMENTS to experiences! survey scientists, CDC obtain technical as- sistance to evaluate intervention programs it is currently funding. In making these recommendations, the committee is painfully aware of two impediments that may thwart administrators who seek to implement them. One impediment arises from the clelays imposed by the federal personnel~system; the second arises from overcrowding at CDC's Atlanta facility. On the latter need, the committee would note that the Presiclential Commission on the HIV Epidemic rec- ommended that long-delayed plans to expand and modernize CDC's Atlanta facility be implemented. It is to be hoped that plans to enlarge the facility will take into account the need to accommodate the new staff recommender! in this report. A more difficult logistical problem may be encountered in re- cruiting appropriate staff. In addition to the delays caused by the federal personnel system, senior scientists may be reluctant to relo- cate on a permanent basis. The committee notes, however, that one- or (preferably) two-year appointments of "visiting scientists" might provide quick access to needed personnel. These positions (and other junior positions, perhaps of longer duration) might be filled through Intergovernmental Personnel Agreements (IPAs) or through the PHS fellowship program. Use of these mechanisms would provide PHS management with flexibility in meeting changing staffing needs. Therefore, the committee recommencIs the use of PHS fel- lowship programs ant} {PAs as an interim means for rapidly enlarging the cacire of senior behavioral and social scientists working on AIDS programs at CDC ant} other PHS agencies. Future Needs In the longer term, planning must begin to train the next genera- tion of researchers. The present cadre of AIDS researchers has been recruited from a wide range of specialities in the behavioral, so- cial, and statistical sciences. This range suggests that an adequately broad and rigorous training in these areas may provide reasonable preparation for work in this field. Nonetheless, much is being learner! by AIDS researchers that is not now included in graduate training within these disciplines. For example, even well-trained graduate students are unlikely to be familiar with such topics as the use of back-extrapolation methods to generate estimates of HIV infection from AIDS case data; procedures for reducing bias when obtaining self-reports of intimate sexual behaviors; or methods for developing

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BARRIERS TO RESEARCH ~ 371 comprehensive instruments with carefully worded questions to max- imize the likelihood of enumerating and understanding factors that encourage or inhibit behavioral change. These skills, which are now being acquired by the current generation of researchers, must find their way into the training programs that will produce the next gen- eration of AIDS scientists. Although it may be too early to prescribe the format of such programs, it is not too early for those concerned with graduate training to begin planning to integrate this material into graduate and postgraduate curricula. Similarly, federal agen- cies (including the National Institutes of Health; the Alcohol, Drug Abuse, and Mental Health Administration; the Centers for Disease Control; and the Health Resources and Services Administration must begin to consider how their programs can be used to ensure that appropriately trained researchers will be available for future work to halt the spread of AIDS. REFERENCES Brandt, A. M. (1987) No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880, expanded ed. New York: Oxford University Press. Centers for Disease Control (CDC). (1987) 1987-1988 EIS Directory. Atlanta, Gal: Epidemiology Intelligence Service and Epidemiology Program Office, Centers for Disease Control. Gerstein, D., Luce, R. D., Smelser, N. J., and Sperlich, S., eds. (1988) The Behavioral and Social Sciences: Achievements and Opportunities. Washington, D.C.: National Academy Press. Hamburg, D. A., Elliot, G. R., and Parron, D. L., eds. (1982) Health and Behavior: Frontiers of Research in the Biobehavioral Sciences. Washington, D.C.: National Academy Press. Institute of Medicine/National Academy of Sciences (IOM/NAS). (1979) DREW Research Planning Principles: A Review. Washington, D.C.: National Academy of Sciences. Institute of Medicine/National Academy of Sciences (IOM/NAS). (1986) Confronting AIDS: Directions for Public Health, Health Care, and Research. Washington, D.C.: National Academy Press. Office of Technology Assessment (OTA). (1985) Review of Public Health Service's Response to AIDS. Washington, D.C.: Once of Technology Assessment. Shilts, R. (1987) And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin's Press.