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Community Engagement

The term community can mean different things to different people at different times. It can mean a group of people who have a common set of interests or a common set of characteristics, or it can mean a group of people who live in a common area or location. Community can also refer to the public at large. Individuals can be a part of multiple communities at the same time. For example, someone might be a member of their local community, a religious community, and a political group.

In biomedical HIV prevention research, there are many community stakeholders and many kinds of "communities," and different communities or community members may have different perspectives, experiences, and feelings.

Why do communities matter?
Community involvement is an essential element of doing biomedical HIV prevention research. Here, the term community generally refers to people who are not scientists or trial staff but who may be asked to participate in or support the research. Community involvement in research can take many forms including building public and government support for research; critiquing, monitoring, advocating, and shaping research projects so that they are acceptable and relevant at local, national, and even international levels; and agreeing to be trial participants. Communities can help monitor ethical and other aspects of trial implementation, and help ensure that trial sponsors and sites meet the commitments they made at the beginning of a trial. Once new HIV prevention strategies are shown to be safe and effective, communities help create a favorable environment for setting up programs locally to implement the new prevention strategies, and in offering critiques when implementation and communication does not meet local needs and expectations.

How have communities been involved in AIDS research historically?
Communities largely shaped and drove the research agenda for the development of AIDS treatments. In the mid-1980s, gay men and their allies in the US and Europe pushed governments to commit resources for research into new AIDS treatments, while also advocating for ethical trial design. Communities of women have worked together to advocate for research on how HIV and HIV medications affect women specifically. Grassroots efforts also helped shape research into rectal and vaginal microbicides and were influential in halting early PrEP trials. In addition to working on research, advocates and activists who were members of many communities affected by HIV (gay, lesbian, poor, people of color, injection drug users, etc.) have gathered and shared accurate information about HIV/AIDS as part of treatment literacy efforts worldwide. All of these types of expertise have shaped, and continue to shape, HIV prevention and prevention research.

-> Which communities are often included in biomedical HIV prevention research?
-> Community Involvement in HIV Research: Making it work- International Council of AIDS Service Organizations, 2006
Read ICASO's report which presents findings from a community-based project that included an in-depth assessment of the role communities play in the development and testing of HIV vaccines

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