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Best practices guidance in conducting HIV research with gay, bisexual, and other men who have sex with men (MSM) in rights constrained environments. Background. Recognition of global nature of MSM/HIV epidemics is growing.
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Best practices guidance in conducting HIV research with gay, bisexual, and other men who have sex with men (MSM) in rights constrained environments
Background • Recognition of global nature of MSM/HIV epidemics is growing. • Recognition that expenditures on HIV programming does not match these growing needs. • Increase interest for research studies to understand these epidemics and advocate for increased funding. • With increased attention comes security challenges and other ethical issues when studying marginalized populations (e.g. gay, bisexual and other men who have sex with men – MSM), especially in ‘rights constrained settings’. • Working group from research and community organizations in the Global North and South came together to develop the Guidance. Utilized a participatory process to develop the Guidance and gain feedback – face-to-face meetings, conferences calls, e-blasts and response throughout 2010-2011.
the Guidance Respect, Protect, Fulfill -- Best practices guidance in conducting HIV research with gay, bisexual, and other men who have sex with men (MSM) in rights constrained environments Ishtar MSM, Nairobi, Kenya Specific Aims: 1) Better design and conduct meaningful research on HIV amongst MSM in challenging social, political and human rights contexts; 2) Provide a check list of factors for researchers and community organizations to consider in the design, conduct and implementation of research; and 3) Offer lessons learned through case studies of research and community partnerships, recent successes and challenges.
Framework Respect ensures that the research studies recognize cultural contexts; that researchers and community organizations respect the key roles each other play in making research successful, and are engaged as full partners in the design and implementation of the research study, as well as dissemination of results. Protect ensures that researchers and community partners do all they can to prevent harm, and protect the rights of participants. Fulfill ensures that any community-related or clinical services offered during the research continue at the same quality once the research has ended, and that both researchers and community organizations build the capacity of each other for future research and advocacy. Eesti HIV-positiivsete vorgustik (EHPV) – Tallinn, Estonia
Role of Researchers Engaging LGBT communities is crucial • Involved in design, implementation, and dissemination (as co-authors; staff) • Know their community – bring legitimacy; know opposition; • Can validate findings and use to advocate for services • Budget needs to be created for community engagement • Various global, regional, national networks exist to find local LGBT leaders Guidance also offers suggestions for: • Engagement rules • Working with governments and institutional review boards (IRBs) • Preparing and responding to hostile reaction • Checklist of questions for researchers to ask community organizations SOMOSGAY – Asunción, Paraguay
Role of Community Organizations Rainbow Sky Association – Bangkok, Thailand The guidance also offers a Checklist of questions for community organizations to ask researchers Meaningful Partnerships • Research can be a useful tool for advocacy efforts – especially when done locally • Research can bring increased attention to MSM/LGBT issues – increasing stigma and discrimination • Community organizations can decided to be part or not part of research studies – including design, implementation, validation and dissemination phases. • Research can build the capacity of community organizations
Case Studies The Guidance contains case studies from research projects in South Africa, Kenya, Brazil, Malawi, and Ukraine. Key Recommendations from the case studies include: • Involve LGBT/MSM leaders in the design, development and implementation • Dedicate budget within research studies for community engagement and incentives for research participants • Conduct formative research on community resources • Dialogue amongst community stakeholders prior to implementation • Develop services that are important to MSM (not just want is important to the researchers) • Develop the capacity of community organizations to be full partners in conducting the research (e.g. ‘sustainable development’) • Design contingency plans to prepare for homophobic responses from local communities
Download / More Information For more information and to download the Guidance – http://www.amfar.org/uploadedFiles/_amfar.org/In_The_Community/Publications/MSMguidance2011.pdf Steering Committee Contacts: amfAR - Kent Klindera (kent.klindera@amfar.org) IAVI - Prince Bahati (PBahati@iavi.org) JHU-CPHHR – Dr. Stefan Baral (sbaral@jhsph.edu) Dr. Cheikh Traore (cheikh.eteka@gmail.com)
Small Group Work • Group 1: Respect: A: What challenges would researchers and/or community organizations have to: • Recognize cultural contexts; • respect the roles researchers and community orgs play in making research successful • Be engaged as full partners in the design and implementation of the research study, as well as dissemination of results. • B: What strategies could be used to over come these challenges? • Group 2: Protect: A: What challenges would researchers and/or community orgs have to: • Prevent harm, and • Protect the rights of participants. • B: What strategies could be used to over come these challenges? • Group 3: Fulfill: A: What challenges would researchers and/or community orgs have to: • Continue offering community or clinical services at the same quality once the research has ended, • Build the capacity of each other for future research and advocacy. • B: What strategies could be used to over come these challenges?