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Key Topics and Resources
This page lists several important topics related to community participation in HIV prevention research
along with brief
information about each topic and resources for more information.
Research Literacy—Understanding More about
Research
Basic understanding of clinical trial concepts
and practices is necessary for meaningful community input into research study
design and implementation. The more communities understand about the purpose –
and limitations – of research in their communities, the more they will be able
to take ownership of the process. Research literate community members can
contribute early and directly to protocol development, informed consent, and
other study-specific materials and decisions. User-friendly approaches and
methods are essential in order to make the science accessible to lay people,
including lay people with little or no formal education.
Research literacy resources:
ClincalTrials.gov Web site
www.clinicaltrials.gov/ct/info/resources
This Web site provides valuable information on
what clinical trials are and answers to many frequently asked questions about
aspects of participating in clinical trials.
Research Ethics
Research ethics training has been identified as a
key training need by community educators, CAB members, and community partners,
who act as voices for the communities in which the research is being conducted.
Community representatives need information on ethical research practices and
guidance on their roles and responsibilities in the research process.
Research ethics resources:
Research Ethics Training Curriculum for
Community Representatives
www.fhi.org/en/RH/Training/trainmat/ethicscurr/retccr.htm
FHI's Office of International Research Ethics (OIRE)
developed the Research Ethics Training Curriculum for Community
Representatives (RETC-CR) specifically to address the need for more
information on research ethics. This dynamic and innovative curriculum helps
empower community representatives through training and education to act as
competent voices for research participants worldwide. Developed and field-tested
in eight countries, the RETC-CR helps community representatives to understand
the research process and their roles and responsibilities as partners of the
research team. The curriculum also explains the corresponding roles and
responsibilities of ethics committees/IRBs and researchers. The RETC-CR
addresses universal principles of research ethics, informed consent, ethics
committees and other important issues.
The RETC-CR is available in English, French and
Spanish in print and on CD-ROM.
Stigma and Discrimination
Stigma remains a significant challenge for
community educators working in HIV prevention research, given that HIV
prevention study communities are often characterized by multiple
vulnerabilities. Merely associating with a research project, including
participation on a community advisory board, can result in stigma and
discrimination. It is important for community educators and advisory members to
recognize and report research-related stigma and social harms to the research
team.
Stigma and discrimination resources :
Understanding and Challenging HIV Stigma: A
Toolkit for Action
www.changeproject.org/technical/hivaids/stigma.html
The toolkit was designed for NGOs, community
groups and HIV educators to raise awareness and promote actions to challenge HIV
stigma and discrimination. Based on research in n Ethiopia, Tanzania and
Zambia, the toolkit contains more than 125 exercises.
Male Involvement
A key activity in building support for HIV
prevention research is that of identifying effective strategies for reaching out
to men in the community, including male partners of female study participants. A
larger goal is to encourage men to support women’s health and transform social
norms and traditional gender roles that place women at increased risk for HIV
infection and other reproductive health problems. By involving key male opinion
leaders as role models, messages can be diffused through social and community
networks. Other popular efforts include reaching men where they are – in
workplaces, in bars and other social settings.
Male involvement resources:
Working With Men, Responding to AIDS. Gender,
sexuality and HIV – a case study collection
http://www.aidsalliance.org/sw7365.asp
This publication is designed to help projects
carry out their HIV/AIDS work with men, presenting experiences and lessons from
a range of projects (some supported by the International HIV/AIDSAlliance and
some not) involved in working with men. By showcasing experiences and lessons
from the field, it offers inspiration, ideas and models for working with
different kinds of men in a range of contexts. It addresses issues such as the
impact of social and economic injustice on some men’s skills and abilities to
cope with the risk of HIV infection, and on the choices available to them.
EngenderHealth’s “Working with Men”
Web site
http://www.engenderhealth.org/ia/wwm/index.html
Most family planning and preventive health
programs focus exclusively on women, forcing women to take a disproportionate
responsibility for reproductive health and family size. The result is not only
an extra burden on women, but a closed door to the health system for men.
EngenderHealth is committed to involving men in reproductive health and
addressing their needs.
Microbicides
Microbicides are products that
could be applied topically in the vagina or rectum to prevent or significantly
reduce the transmission of HIV and other sexually transmitted diseases (STDs).
They are not yet available, but scientists are testing over 60 different
products. Microbicides could be produced as gels, films, suppositories,
and slow-releasing vaginal rings. Safe and effective microbicides will help
women substantially reduce their risk HIV infection during sex, as many women
around the world do not have the power to negotiate condom use with their
partners.
Microbicides Resources:
Global Campaign for Microbicides
http://www.global-campaign.org/index.htm
The Global Campaign for Microbicides is a
broad-based, international effort to build support among policymakers, opinion
leaders, and the general public for increased investment into microbicides and
other user-controlled prevention methods. Through advocacy, policy analysis,
and social science research, the Campaign works to accelerate product
development, facilitate widespread access and use, and protect the needs and
interests of users, especially women.
Advocacy
Advocacy
involves shaping or influencing ideas and decisions that inform programs,
practices and policies. Within the context of community involvement in
research, it means ensuring that community perspectives are included throughout
the research process, through representation on decision-making bodies,
mobilizing resources, and creating strategic partnerships and key messages.
The establishment of viable models and best practices is key to a successful
advocacy strategy.
Advocacy
tools include public education and outreach, social science research, media /
communications, activism, constituency building, political mobilization, and
policy analysis. Advocacy efforts target NGOs, opinion leaders, the
scientific establishment, providers, donors / sponsors, policymakers and
legislators.
Advocacy Resources:
The Advocacy Institute
http://www.advocacy.org/
For over 20 years, the Advocacy Institute has
helped social justice leaders in the U.S. and abroad work more effectively for
change through training in advocacy skills, networking with other activists, and
one-on-one coaching. They provide participants with tools and resources to:
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Plan and implement successful advocacy
campaigns
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Manage and evaluate coalitions
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Develop effective messaging for the
media and key stakeholders
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Build effective organizations
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Ensure victories can be sustained in the
long-run
HIV/AIDS
Network Collaboration
Since October 2004, The
HIV/AIDS Network Coordination office (HANC) has played a key role facilitating
cross-Network coordination and collaboration among the HIV/AIDS research
Networks funded by the National Institute of Allergy and Infectious Diseases (NIAID)
and collaborating Institutes and Centers of the National Institutes of Health (NIH).
These collaborations are critical to effectively develop and implement a
clinically relevant, interdisciplinary, ethically sound and cost-efficient
HIV/AIDS research program. HANC provides expertise, resources, and procedures
for cross-Network coordination. The mission of HANC is to bring many research
partners to the table to develop and implement focused global coordination
activities across HIV/AIDS research collaborations to enable superior research
that will hasten the end of the HIV/AIDS pandemic. One of these
collaborative groups is the Cross-CAB Working Group, or CCWG.
HIV/AIDS
Network Collaboration Community Involvement Resources:
Cross-CAB Working Group
http://hanc.fhcrc.org/community
The Cross-CAB Working Group is comprised of network community
education staff and volunteer community representatives from the DAIDS funded
HIV /AIDS clinical research networks and is working to increase inter-network
community support and collaboration on priority areas for coordination – to
increase communication, and streamline processes in a way that will lead to
improved research efficiency.
Cross-CAB
Network Meeting, May 5-6, 2005
Community representatives from each of the
networks sponsored by the NIAID’s Division of AIDS gathered May 6-8, 2005 in
Washington, DC to discuss the role of the community in HIV research. During
this meeting, community members discussed successful participation by the
community in the research arena, roles and responsibilities, and what
researchers need from community input. Various models of community
participation were presented. The group discussed and produced documents
outlining the support mechanisms needed for the community to participate fully
in the DAIDS networks, including training, evaluation of the community work,
and support mechanisms such as financial, translation and administrative
support. The “Defining Best Practices for Community Representative
Involvement in HIV Clinical Research Networks” report is a result of that
meeting.
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