Introduction
Elimination of the HIV/AIDS epidemic, or even the slowing of its spread, will not result solely from any biomedical development such as a vaccine. HIV/AIDS is intricately interwoven with individual behavior and social context. Without expansion of the research base in the social and behavioral sciences and without the inclusion of social and behavioral sciences as an integral part of all biomedical interventions, the campaign against AIDS will be incomplete and less effective than it could be. To attempt to control the epidemic without these added tools would be like sending a physician or public health worker into a community without an up-to-date street map or a plan of action.
As one example, a Phase 3 vaccine efficacy trial for HIV, which is still on the horizon, would be the most complex and difficult clinical intervention trial ever attempted in the public health system in the United States. The success of such a trial will depend critically on previous social and behavioral research to address issues such as recruitment, retention, and evaluation. Yet, an enormous amount remains to be learned about subgroups within the high-risk populations who would be in such a trial, such as active drug users, mobile young gay men, and sex workers. The community preparedness has not been completed; the issues of recruitment and retention have not been adequately addressed; and we have not begun to deal with the fact that in some minority communities there is a suspicion of vaccine trials. Social and behavioral scientists can help to address these issues so that when a biomedical tool is available for widespread testing and distribution, it can be fully implemented.
Until now, most behaviorally based AIDS prevention research has focused on the individual as the locus for risk analysis, intervention, and evaluation. Although this is important, it must also be recognized that all individual behavior is embedded in and influenced by its social and physical environment. Individual social cognitions, health attitudes, and personal habits are heavily influenced by family members, peers, local community members, and the media. But broader social forces such as economics, politics, and international affairs also shape individual decisions and personal practices.
The workshop summarized here was organized and overseen by a separate steering committee, but grew out of a larger project at the Institute of Medicine (IOM) that resulted in the 1994 report AIDS and Behavior: An Integrated Approach. The original project assessed the balance between biomedical and behavioral research in the AIDS research programs at the National Institute of Mental Health, National Institute on Drug Abuse, and National Institute on Alcohol Abuse and Alcoholism, but it did not have as part of its charge the task of reviewing the broad social science base of behavior and how it relates to AIDS. After publication of the report, there was some concern that an important piece of work was missing from the committee's charge and that a more diverse set of disciplines deserved consideration. The workshop summarized in this report provided an opportunity to consider the potential contributions of the social and behavioral science base for AIDS prevention, to question the current understanding of the epidemic, to draw new insights to help guide further research on complex issues, and to identify important research questions and relevant methodologies.
The Institute of Medicine, with support from the Office of AIDS Research at the National Institutes of Health, brought together a diverse group of scientists, clinicians, and advocates for a one-and-one-half-day meeting. Many of the researchers were experienced in the AIDS field, while others were distinguished social and behavioral scientists whose work has not focused on AIDS. Some researchers came from the tradition of clinical social science investigation, while others saw risk behaviors in a broad social, political, economic, and cultural context. Thus, new and broader views were brought to bear on examination of research opportunities.
Four primary presentations were made during the workshop. These presenters based their comments in part on commissioned background papers they had prepared for the IOM. Each presentation was followed by discussant commentary and by an open discussion with other invited participants. Three panel presentations also were prepared and presented on specific topics (See Appendix A and Appendix C for the workshop's agenda and titles of commissioned background papers and responses). The organization of this summary differs from the workshop agenda in order to be more accessible to the reader. Its content, examples, and conclusions, however, were presented at the workshop
or detailed in commissioned and response papers (included on diskette with this summary, also see Appendix C).
This summary is targeted primarily to policy-makers who will be making decisions for the HIV/AIDS research agenda in the next decade. It is also relevant for all researchers in the AIDS field, including those who are not in the social and behavioral sciences, because eventually AIDS research must become truly cross-disciplinary. It was beyond the scope of this workshop activity to provide a full description, summary, or assessment of all the many methodologies employed by social and behavioral researchers. However, the committee hopes this summary gives readers concrete examples of how such methods can contribute valuable information that can be applied to the design and implementation of prevention strategies. Although there are no formal recommendations in this report, a major theme of the workshop for policy-makers is that programs to encourage and bolster use of social and behavioral methods in research supported by the National Institutes of Health, the Centers for Disease Control and Prevention, and other agencies will be good investments for the future. It was recently reported at the 25th Anniversary meeting of the Institute of Medicine that the threat of emerging and reemerging diseases is greater now, in part due to the gradual dismantling of many public health systems that have served us well in the past. It can be argued that such effective public health systems benefited from early social and behavioral research and that these methodologies are needed again —for HIV/AIDS and for other epidemics that may confront us in the future.