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OCR for page 359
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
OCR for page 360
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 epidemiology—for 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
OCR for page 361
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.
OCR for page 362
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
OCR for page 363
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.
OCR for page 364
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
OCR for page 365
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
OCR for page 366
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.
OCR for page 367
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
OCR for page 369
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
OCR for page 370
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
OCR for page 371
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.
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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:
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Institute of Medicine/National Academy of Sciences (IOM/NAS). (1979) DREW
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New York: St. Martin's Press.
Representative terms from entire chapter:
social scientists
