Researchers seek consistency, reliability, and control. Whereas the stereotype of drug users is that of inconsistent, unreliable, and out of control. Based on drug user treatment and medical models, research programs that involve drug users are often designed to control and dictate the behaviors of drug users. This system leads to interactions that perpetuate stereotypes and narrowly prescribed social roles. Moreover, such programs often focus on and highlight individuals who do not conform to expectations and the goals of the organization rather than those who may meet and exceed program goals.
In contrast to researchers, drug users’ goals in participating in research include improvement of health and greater understanding of substance use and misuse. Economic opportunities are another important set of goals. These may be a short-term goals addressed though payment to participate in research and/or long-term trainings that may lead to employment opportunities. Other important goals include acquiring skills that may be used to address a range of issues, respect and social rewards from family and friends for engaging in activities that are valued in the community such as work and peer health education, intrinsically meaningful activities.
The roles of drug users in research can be seen as ranging from passive to active, in contexts from the street to the sites of policy and decision making and in hierarchies as well as being partners:
Passive subjects who are administered surveys and provide biological specimens. Individuals who provide their impressions, opinions, and life history in qualitative interviews in research settings control the researchers
Ethnographies with the researcher observing and interacting with users in the users’ territory. This may include ethnographies of drug user organizations
Utilization of users in research
Key informants to provide information on recruitment and help test intervention materials
Recruiters of other users through peer outreach, RDS
Peer educators who may be trained by a researchers but then work in the community and are supervised by researchers
Users who are hired as paraprofessionals to co-facilitate or facilitate trainings, such as overdose and HIV prevention and care interventions, designed by researchers
Community based participatory research with users involved in the design and execution of the program
Community based participatory research with users designing and executing the program with technical assistance from researchers
Research independently designed by drug users who are professionals
Few research projects focus on the active end of the spectrum. For researchers a critical question is how to create more active and diverse social roles and activities as part of research enterprises that address the needs and goals of drug users? What are the parameters of these roles? Moreover, although these roles may be perceived as being valuable to drug users, it is fundamentally different from drug users designing their own organizations and concomitant social roles. However, without stable and active drug users organizations it may be difficult to empower drug users as well as not to serve as and/or be co-opted into being barriers to develop new social roles or to conduct community based participatory research. Hence, there is a necessity to facilitate the development of drug user organizations. In the event when it is not feasible to institute drug user organizations, due to the economic condition and social organization of users, or in parallel with their development, researchers can develop meaningful social roles; however, it may be difficult to sustain them without the infrastructure of user groups.
Biographies
Carl Latkin, Ph.D., is a Professor at Johns Hopkins Bloomberg School of Public Health, Department of Health, Behavior & Society. His work has focused on the social and physical context and well-being of drug users and other marginalized populations and developing intervention to enhance the role of drug users in community-based health promotion.
Sam Friedman, Ph.D., sociologist, is a Senior Research Fellow at the National Development and Research Institutes, Inc. (New York, USA) and the Director of the Interdisciplinary Theoretical Synthesis Core at the Center for Drug Use and HIV Research. Dr. Friedman is an author of more than 400 publications on HIV, STI, and drug use epidemiology and prevention. He has both studied drug users organizations since 1985 and has also worked closely with drug user activists in their efforts to fight HIV/AIDS, hepatitis C, and other medical and social harms that drug users encounter.