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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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