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Site Activities & Research

Community involvement at the site level has a common purpose throughout the Network, yet there is tremendous diversity in how the sites guarantee community participation. Although sites may be working on common protocols, the partnership with the community at each site may be very different.

The importance of sharing information about what communities and sites are doing becomes an important way to support innovative and productive community participation throughout the Network.

Key to community participation is for the sites to develop and implement community education activities and establish a community advisory process. Each site in the Network is required to develop a community education plan and is given the authority to create an advisory process appropriate to the research topic and communities where research will be conducted.

For more about how the Network supports developing plans for community education, visit the Network Community Educators page.

Community Involvement
Including community members at all stages and levels of the research process helps build trust and mutual understanding helping to ensure values and cultural differences among participants are respected. Creating and supporting a community advisory process with an established structure and methods of governance is the foundation for creating a solid, collaborative relationship between the community and the research site.

Important to developing community involvement is the concept of a "stakeholder" in the research process. A stakeholder can be defined as:

People or organizations affected by the outcome of a proposed action, intervention, or research effort in their community - negatively or positively - or someone who can affect the outcome the proposed activities.

Some stakeholders may be directly impacted by the action, while others may only have indirect interests what happens to those directly affected. The distinction between both a "direct stakeholder" and an "indirect stakeholder" becomes very important when community input is needed about a potential research effort.

  • Direct Stakeholders: Individuals or groups immediately affected by a research effort and who stand to personally benefit or lose from the research in their communities. Usually the direct stakeholders will be the target population of the study itself. Marginalized and stigmatized community members are often among this group, and are often perceived as the most difficult to identify and involve in participatory efforts.
  • Indirect Stakeholders: Individuals, groups, or organizations that are removed from the immediate involvement of the HIV prevention research efforts, but may be linked in some way to those who are directly affected. Such stakeholders may include Non-Governmental Organizations (NGOs), intermediary organizations, private sector businesses, and political organizations, as well as family members of direct stakeholders, employers, and the general community affected by the issues and concerns of direct stakeholders.

However the site decided to develop their community advisory process, they must establish and maintain a process for affected communities to:

  • Receive culturally appropriate study information
  • Be given the opportunity to offer their opinions on the research
  • Make decisions about research issues affecting them
  • Have an impact on the research process
  • Have autonomy regarding their involvement in the research.

Advisory Structures
In HIV research in the United States, the advisory process has traditionally been ensured through the creation of a Community Advisory Board (CAB). Respect for social and cultural structures of local communities has lead to the need for some site to develop alternative advisory structures to guarantee direct stakeholder input.

Alternative advisory structures to CABs require that alternative methods for gathering input from the community must be guaranteed and opinions can be exchanged.

Community advisory structures can be established a number of different ways depending on varying factors at the site. Some advisory structures that presently exist are described below:

  • Site-coordinated process that supports communication with direct stakeholders and community members through regular processes without an advisory group (for example, conducting focus groups, coordinate a community meeting, conducting street outreach surveys, working with existing support groups)
  • CAB made up of indirect stakeholders and a system of regular communication with direct stakeholder communities (for example, conducting focus groups, conducting street outreach surveys, working with existing support groups)
  • Site CAB with both direct and indirect stakeholders
  • Site CAB with direct stakeholders only
  • Coordinating CAB advising on multiple studies with formalized system of communication with issue-focused stakeholder groups (sub-CABs)

Site Activities
This area is being revised.  Look for new content soon.  

 

      
 

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This page was last updated: June 07, 2007