What Do We Mean by Community?

Competing & Changing Definitions of Community “…separate and overlapping groups of people who are infected and affected by HIV in various ways” –Good Participatory Practice, UNAIDS/AVAC “ …trial participants, their families and partners, other local stakeholders, and service providers/community groups within the geographic parameters of the clinical trial location. –MDS Civil Society Working Group Report “…the group of people who will participate in or are likely to be affected by or have an influence on the conduct of the research.” –HIV Prevention Trials Network, Community Program FAQs

…Or No Definition At All In addition to many competing definitions, often times people talk about “community” without defining what they mean or who they are specifically referring to.

Locating Community When we talk about community, it is important to frame the discussion in terms of: –Who is included in the particular “community” we are discussing? –And distinguish which “level” we are referring to

“Trial Participants & Study Staff” refers to the women directly participating in the trial, in some instances their partner(s), and study staff working at the trial site.

“Host Community” refers to the individuals living in the area of the trial, their leaders, and community-based organizations that serve or represent them directly. This can also include traditional healers, local radio, and other community structures (including CABs)

“National Stakeholders” describes anyone who has a role to play in the political, scientific, and social enterprise of microbicide development in the larger, national community. It includes political decision-makers, MoH, regulatory bodies, ethical review committees, national NGOs, donors, national media, etc.

“International Civil Society” refers to non-profit, organized, citizen-led movements or groups interested in the goals, process, and outcomes of microbicide research, and/or in the rights of communities or research participants. Civil society includes international or regional NGOs (GCM/UNAIDS), international or media.

Community Education Staff Typically Work in This Arena But need to also think of ways to move beyond the host community into stakeholder and civil society arenas

Whereas NGOs have typically worked in this arena And have recently started to think of ways to also engage with host communities, trial participants and study staff

Locating Community: Real Life Examples Community Mapping NHVMAG Consultation on National SOC Guidelines GPP Process ICASO Community Voices Project