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Community Program FAQs
Community Participation
What does
"community" mean?
Community can be described in many
different ways. One (of many) basic definitions is:
One or many groups of people who share common
identity on the basis of location, ethnicity, occupation, sexual orientation /
behavior, or common interest or activity.
How is
"community" defined in the context of research and the HPTN?
For the purposes of HPTN research, a
community is 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. The community
may include:
- The group from which study participants will
come (e.g., a specific group women at risk for HIV who use services in a
prenatal clinic, injection drug users in a certain location, or a geographic
community);
- The broader geographic community in which the
study will be conducted;
Influential or key individuals from this community, such as traditional or
governmental leaders, professionals or volunteers who work with HIV
prevention or research programs in the community in which the study will be
conducted, members of the healthcare and medical community.
What is meant by
"community participation" or "community involvement" in the
HPTN?
For the HPTN, community participation
or involvement is bringing the community voice into the research. The HPTN is
committed to ensuring community input into the research at every level of the
HPTN structure and at each stage of the research development and implementation
process. This means that ways for the community to participate fully at every
stage of the research process and to express opinions and concerns and for
influencing the research have been established and implemented.
What measures have been
established for community involvement in the HPTN?
- Representation in governance and key
scientific committees
- Mandate/support for community programs at each
site
- Representation in protocol development and
review
What is a Community
Advisory Board?
Community Advisory Boards (CABs)
serve as a voice for the community and local study participants. CABs provide
input into study design and local study procedures. CABs work to ensure that
research strategies respect the values and cultural and ethnic differences among
participants. Members of a Community Advisory Board vary according to locale and
situation. Membership may include community members who share characteristics of
study participants (or study participants themselves), representatives of local
agencies working with HIV-related services or programs, religious or community
leaders, and professionals with relevant research and/or scientific expertise.
Must every HPTN site have a
CAB?
The HPTN recognizes that the
partnerships between a community and a research project can develop in many
different ways over time. As a result, the ways a research project receives
guidance from the community and shares information about research activities can
happen in different ways as well. In the US, a common way to ensure a community
partnership is to have a Community Advisory Board while some international sites
have developed ways to share information between community and research team in
less formal but appropriate ways.
At what point should the
study community get involved?
This depends on whether or not the
idea for the study came from outside of the community. Ideally the community
should be involved at the very beginning of the planning of the research, as the
priority placed on a specific HIV prevention project by the community may be
very different than the partnering research team. A joint partnership based on
trust and shared experiences established early in the research process will make
for better results for both the community and the research team.
What should a community
expect by participating in a research project?
Expectations about participation can
vary between communities and research projects, but there are some basic things
that can be expected:
- To be treated with respect and dignity
- That an official method is available for
community members to receive information about the study, provide
information about needs and concerns of the community to the study staff,
and to have meaningful impact on decisions that affect the community
- Full disclosure of the study concepts, impact,
methods of implementation, responsibilities to the community after the
research study is completed that is described in an appropriate and
understandable way
- Possible harm from participation is prevented
as fully as possible
- Referral to care and compensation if harm does
occur
What are "community
advisory" functions?
This refers to the ways that a
community provides and receives information while working with the HIV
prevention activities in the HPTN. The Network recognizes that the level of
community input affects the quality final results of the research. In order to
support community participation, ways to receive advice from the community on
all aspects of the research and its impact on the community need to be
established and maintained. These systems of information exchange make up the
community advisory functions.
Community Education
What is community
education?
Community education involves
mobilization, sensitization and engagement of communities into which HPTN
research will be introduced. This includes facilitation of awareness of HPTN
research among local and national opinion leaders in order to build trust,
acceptance and willingness to participate. Educational priorities, strategies
and messages must be tailored to and determined with input by the target
communities, and based on needs identified by the community. Community education
is effective only when there is ownership over the problem and involvement in
the action taken to address it.
What is a community
educator?
Consistent with the diversity across sites and the sites' notions of what
constitutes community education, there will be diversity in the roles and
responsibilities of the community educator as well. Typically, community
educators have some of the following responsibilities:
- Raise the level of awareness about HIV
prevention research in the community
- Engage communities in ongoing dialogue about
the research conducted by the site
- Build positive working relationships with
other organizations involved in HIV/AIDS related activities.
What is the difference
between community education and recruitment?
Community education and recruitment are complementary activities. Effective
community education results in a community that is knowledgeable about HIV
prevention research in general, and details about the specific HPTN trial in
particular - which in turn results in well informed study participants, who
become community advocates for the trial. Community education helps to lay the
foundation for recruitment and ongoing dialogue between community members and
research.
What are some examples of
how the community can be involved in the research?
- Community Advisory Boards
- Town meetings
- Acceptability of research to the community
- Media coverage
- Referrals for study participation
- Input into informed consent process
What are the "Regional
Trainings"?
Regional trainings are organized by the CORE to bring together community
educators and community representatives from HPTN sites by region (Africa, Asia
and Russia, South America and U.S.) to participate in interactive skills-focused
training workshops. Workshops are based on needs identified by the HPTUs and
include core modules as well as small group work. Topics may include an overview
of HPTN research, ethics, how to read a protocol, rationale and methods for
community participation in research, conducting community needs assessments, and
development of the site community work plan. The trainings also provide an
invaluable opportunity for participants to establish regional networks and
exchange expertise.
What are the roles and
responsibilities of investigators and study staff in community involvement?
The primary role is to develop a true partnership between the research project
and the community in all aspects of research design, implementation and
dissemination. Research staff is responsible for ensuring sustained two-way
communication and information exchange between community members and themselves.
Ethics
Why is community
participation critical to the HPTN research ethics discussion?
Research ethics concerns itself with what is right and wrong regarding the
conduct of clinical trials with human subjects. Within HPTN research, ethics is
about making decisions that will protect study volunteers from harm and
conducting trials that are responsive to local health needs. Community members
are best able to provide insights about particular conditions that might
increase vulnerability of trial participants, as well as identify factors that
might be considered coercive to participation.
What is "informed
consent"?
Informed consent refers to the process of ensuring that individual study
participants fully understand the purpose, facts, risks and benefits of the
research before making a decision to participate. It may be defined as a
participant's:
- Being given adequate information about the
research study
- Understanding and voluntarily accepting the
terms of the study, including the right to leave at any time
- Agreeing to cooperate in the study's conduct,
ie. study procedures and follow-up schedule
Informed consent is an on-going process that only
ends when the participant leaves the study.
What is the Community
Education Plan?
The community education plan describes the community education project's
planning cycle. Each plan should include:
- Project goals and objectives
- Needs assessment of community education needs
- Identification of target audience
- Selection of interventions / channels of
communication
- Implementation schedule
- Evaluation indicators
Collaboration is mentioned
a lot. What does "collaboration" mean in the HPTN?
Collaboration occurs when two or more organizations or groups enter a mutually
beneficial and well-defined relationship to achieve results they are more likely
to achieve together than alone. It goes beyond cooperation insofar that it
involves investment of resources by all collaborating parties.
What is a "needs
assessment?"
A needs assessment is a systematic process of obtaining and analyzing
information to determine unmet needs of a specific population and reveal
priorities for intervention.
What is a resource
inventory?
A resource inventory assembles the current HIV prevention and care activities
and services and related resources within the project area. It should include
name, address, contact information, program focus, target population(s) and
strategies or interventions used.
What is "parity"?
Parity refers to all members of a group being provided with orientation and
skills-building opportunities that empowers them to participate and have equal
voice in decisions that are made.
What is
"inclusion"?
Inclusion refers to the assurance that all views, perspectives and needs of all
affected communities are included and involved in a meaningful manner in the
process.
What is
"representation"?
Representation refers to the assurance that those who are speaking for a
specific community truly reflect that community's norms, values and behaviors.
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