Editorial: Challenges in Engaging Community Participation in HIV Prevention Research

Many of the populations most affected by HIV are difficult to reach using clinic-based or even conventional outreach techniques. They may engage in illegal behavior, such as sex work or injection of opiates or methamphetamine; they may be hidden by virtue of stigma or discrimination (e.g., men who have sex with men [MSM] who do not identify as gay or do not openly discuss their sexuality); or they may not be active participants in "at-risk" communities, although their individual behavior may place them at risk for HIV (e.g., MSM who live outside of established "gay ghettos"). In addition, HIV is a stigmatizing condition and some people may be concerned that even showing interest in HIV prevention (e.g., attending an HIV prevention workshop) may lead to their being labeled as someone who is infected with the virus.¹ Stigma of this sort has been a problem with diseases that often co-occur with HIV (e.g., sexually transmitted infections), as well as psychiatric and substance use disorders that contribute to HIV risk. In general, stigma often has been a formidable barrier to prevention, screening, and treatment for a variety of infectious (e.g., tuberculosis) and chronic diseases (e.g., cancer).²

Because of the often hidden nature of populations at risk for HIV and the stigma associated with HIV risk behaviors or membership in a population at elevated risk, HIV prevention has required a high degree of creativity that incorporates sensitivity to cultural norms, sophistication about gaining entry into populations and settings of interest, and collaborative means for enabling participation in research and clinical activities. Given these conditions, it is not surprising that HIV prevention research has helped advance the development of new technical tools for sampling "hard-to-reach" populations and collecting data on sensitive topics. Examples of innovative sampling methods include respondent-driven sampling, geo-mapping, capture-recapture methods, and refinements of venue sampling.^3–6 Prevention research also has fostered development of new qualitative data collection tools such photographic documentation of settings by participants and rapid ethnographic techniques.^7,8 Quantitative methods based on computerized self-interviewing and new platforms such as personal digital assistants have improved the assessment of sensitive information and enabled new kinds of behavioral sampling.^9,10 In addition, noninvasive biological tests have made it possible to conduct biobehavioral research relatively unobtrusively in community settings.⁴ Despite these technical advances, much of the work of conducting research with "hard-to-reach" populations involves developing an understanding of how to engage people who are likely to be at risk and build durable collaborations.

There are long traditions of community-based research, often with marginalized populations, in a variety of fields including anthropology, sociology, and epidemiology. In the social sciences, this work has historically tended to be descriptive in nature and some researchers, particularly in anthropology, have expressed concern about introducing change into communities, regardless of its assumed benefits.¹¹ Epidemiologic work in communities often has had immediate public health imperatives, as in case of disease outbreaks, and, under these circumstances, has had a level of authority that is missing from more routine kinds of community intervention.¹² The studies presented by Remple et al.¹⁴ and Rhodes et al¹⁴ represent an evolution away from the descriptive traditions of social science field work and traditional public health imperatives. They are part of a trend toward engaging at-risk populations as participating collaborators in research rather than as objects of observation or intervention, which has been the case over the past few decades. The beginnings of this trend coincided with the early days of the HIV epidemic that came to be characterized by a degree of activism by affected populations previously unseen in public health or clinical medicine.

The process of determining what is good for society and for researchers is complicated at best.¹² Moreover, the interests of researchers, however beneficent, may be time limited, although their impact on a community may be quite long lived. Similarly, researchers may have only limited access to resources desired or valued by community members. Permission for a...