This section highlights several important topics related to community participation in HIV prevention research.
A basic understanding of clinical trial concepts and practices is necessary for meaningful community input into research study design and implementation. The more communities understand about the purpose and limitations of research in their communities, the more they will be able to take ownership of the process. Research literate community members can contribute early and directly to protocol development, informed consent, and other study-specific materials and decisions. User-friendly approaches and methods are essential in order to make the science accessible to community members.
Research literacy resource:
ClincalTrials.gov provides valuable information on what clinical trials are and answers too many frequently asked questions about aspects of participating in clinical trials.
Research ethics involves the application of fundamental ethical principles to a variety of topics involving scientific research. These include the design and implementation of research involving human experimentation, animal experimentation, scientific misconduct (such as fraud, fabrication of data and plagiarism) and regulation of research.
Research ethics training has been identified as a key training need by community educators, CAB members, and community partners, who act as voices for the communities in which the research is being conducted. Community representatives need information on ethical research practices and guidance on their roles and responsibilities in the research process.
Research ethics resources:
Research Ethics Training Curriculum for Community Representatives (RETC-CR) was developed by FHI's Office of International Research Ethics (OIRE) specifically to address the need for more information on research ethics. This curriculum helps empower community representatives through training and education to act as competent voices for research participants worldwide. Developed and field-tested in eight countries, the RETC-CR helps community representatives to understand the research process and their roles and responsibilities as partners of the research team. The curriculum also explains the corresponding roles and responsibilities of ethics committees/IRBs and researchers. The RETC-CR addresses universal principles of research ethics, informed consent, ethics committees and other important issues.
The RETC-CR is available in English, French and Spanish in print and on CD-ROM.
Stigma, the disapproval of personal characteristics or beliefs, remains a significant challenge for community educators working in HIV prevention research, given that HIV prevention study communities are often characterized by multiple vulnerabilities. Merely associating with a research project, including participation on a community advisory board (CAB), can result in stigma and/or discrimination. It is important for community educators and advisory board members to recognize and report research-related stigma and social harms to the research team.
Stigma and discrimination resource
Understanding and Challenging HIV Stigma: A Toolkit for Action was designed for nongovernmental organizations (NGO), community groups and HIV educators to raise awareness and promote actions to challenge HIV stigma and discrimination. Based on research in n Ethiopia, Tanzania and Zambia, the toolkit contains more than 125 exercises.
Research is successful when there is active participation by the communities involved in the studies. Including community members at all levels of the research process helps build trust and mutual understanding of research issues and ensures that values and cultural differences among participants are respected.
Community Advisory Boards (CABs) build and foster partnerships between researchers and local study communities impacted by HIV/AIDS. An active CAB with a committed membership is an integral part in the effort to combat AIDS. CABs can help strengthen local capacity to respond to critical research needs in the future.
Community involvement in research resource:
Recommendations for Community Involvement in National Institute of Allergy and Infectious Diseases HIV/AIDS Clinical Trials Research is the product of extensive community experience and expertise from around the world. With it, the National Institute of Allergy and Infectious Diseases (NIAID) Division of AIDS (DAIDS) and Community Partners hope to provide a tool for researchers and community representatives to further expand and deepen existing partnerships and forge new ones in clinical trials research in our common quest to find better ways to prevent, treat, and find a cure for HIV/AIDS.
Identifying effective strategies for reaching out to men in the community, including male partners of female study participants, is a key activity in building support for HIV prevention research. A larger goal is to encourage men to support women’s health and transform social norms and traditional gender roles that place women at increased risk for HIV infection and other reproductive health problems. By involving male opinion leaders as role models, messages can be diffused through social and community networks. Other popular efforts include reaching men in workplaces, through religious institutions, and other social settings.
Male involvement resource:
Engender Health’s established its Men As Partners (MAP) program in 1996. This program works with men to play constructive roles in promoting gender equity and health in their families and communities.