Background
Workshop organization and participants
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What is ultimately the goal (or range of goals) of engaging communities in research with MSM in contexts like ours? How do these goals differ depending on different interests of key actors, to what effect and for whom?
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How might the range of communities to be engaged with be identified? Who represents these communities and how, and through which forms of engagement can this representation be facilitated? What should be done when representatives of different communities have opposing views of what should be done or how activities might be taken forwards?
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What are the responsibilities of researchers with regards to tackling the health needs and underlying factors contributing to health problems, stigma and discrimination, and where do those responsibilities end?
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What kinds of networks and collaborations might play a role in translating research findings into evidence-based policies and programmes? What types of activities can facilitate this ‘research uptake’ or ‘knowledge transfer’?
Key discussion points and emerging issues
Language is ethically charged
Public health or human rights approach to community engagement?
Developing community engagement plans
Examples of goals of engagement | Suggestions based on field experience | Examples of issues and challenges |
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Research | ||
• Better designed and implemented studies (questions, ways of working, benefits, CE) | • Include diverse representatives of key populations in a range of interactions in designing studies, how they are implemented and feedback • Community representative groups such as CABs/Gs may be considered as a key channel of engagement • Ensure all research team members and CE partners understand the research and CE goals, limits and messages | • If/how to engage those who choose not to be identified? Risk failing to engage with those who do not feel represented by self-proclaimed ‘representatives’ • Potential to breach confidentiality and exacerbating risk in interactions with representatives • Should CAB/Gs include non-MSM representatives? If not, should separate CAB/Gs be established to engage with other community members? (Table 2) |
Public health | ||
• Improved health and well-being for MSM • Improved health and well-being for general communities | As above and • Provide evidence to support MSM-friendly policy change • Providing MSM-specific access to healthcare with MSM friendly staff • Where possible, provide services to a wider range of community members than currently access services, and do not make access to such services dependent on research participation • Lobby (through networks) for health policy change to support improved health and well-being for MSM as important part of general community • Link with LGBT organisations to refer to services beyond medical research and care | As above and • Key messages about health research involving MSM not carefully worded and understood by all research team members can be stigmatising for MSM • Activities can contribute to MSM discrimination by targeting MSM communities as specific beneficiaries of interventions that many others would appreciate; such activities also separate and make more visible MSM from other community members • Activities may be interpreted as promotion of homosexuality, exacerbating MSM discrimination |
Human rights/social justice | ||
• Advocating for legal changes • Empowerment of MSM individuals and communities | As above and • Lobby for specific health and social rights of MSM • Hire LGBT staff • Provide training about LGBT issues to all staff and healthcare providers | As above and • Failure to act may result in tokenistic research agendas and contribute to structural violence • May need to operate covertly to ensure safety of participants and operations |
Examples of goals of engagement | Successes and suggestions | Examples of issues and challenges |
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Research | ||
• Researchers better understand the social context of the research and have the potential to hear about and respond to issues before they become serious problems | • In communications about research, one meeting participant described it as helpful to explain their interest in health research broadly – not just for example among MSM | • Communications aimed at explaining research or support for MSM can be understood, interpreted or otherwise shared in the broader community as promotion of homosexuality |
Public health | ||
• Increased awareness in local communities that MSM exist and that some have serious health and broader vulnerabilities | • Several meeting participants discussed the value of focusing CE discussions on behaviour (for instance anal sex) regardless of sexuality to minimise ‘othering’, or the perception that that health concerns do not apply to heterosexuals | • Tendency especially in public meetings for simplification of issues, or issues being sensationalised; e.g. – there can be a conflation of identity with risk practice – risk information can be translated or interpreted as MSM communities being ‘dangerous’ to the broader community as opposed to vulnerable to some health problems |
Human rights/social justice | ||
• Changed attitudes towards MSM in communities where research is being conducted | • The general community involves many overlapping sub-communities based on, for example, business interests, gender and religion; workshop participants described the importance of regular and often informal interactions with as many communities as possible | • Language and otherness – ‘they’ falsely distinguishes MSM from the broader or ‘general’ community |
General considerations in planning CE for MSM research
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It can be helpful in the planning of CE for MSM studies to define CE as communication and interaction about research and associated activities (for example, discussions about what kinds of health services should be provided to participants), rather than as the actions or ways of working that are identified or agreed upon through that process of participation (for example, the health services that are provided as a result of CE discussions). In so doing, however, we note that these engagements will discuss critical ethical issues including designs of studies, benefit sharing approaches, recruitment and confidentiality procedures, and advocacy strategies.
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Defining communities to engage with is a complex and ultimately contrived activity because people are members of multiple communities, membership of communities changes over time, and communities can be defined differently by different people such as researchers and ‘community’ members themselves [32]. Defining MSM communities specifically, and selecting appropriate, widely agreed ‘representatives’ of MSM communities, is particularly complex in contexts of stigma and segregation, with many MSM not self-identifying as MSM, and not necessarily participating in any MSM communities, however defined.
Experiences and challenges with engaging specifically with MSM communities in research (Table 1 )
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Honest and open communication about what the goals of engagement are and what can be achieved for MSM communities through research, given what are often critical and multi-faceted needs;
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Ensuring that what is promised and given to MSM participants and communities as part of research is not organised in such a way as to undermine individuals’ abilities to make free and informed choices about whether or not to participate in that research;
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Avoiding being drawn into internal conflicts within and between different LGBT/GMT groups in such a way as to undermine research benefits or increase vulnerability of MSM participants or communities; and
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Seeking out and taking into account the views and priorities of arguably the most vulnerable MSM – those who chose not to be identified and who do not necessarily identify with GMT – while ensuring that those individuals’ identities are not exposed to others against their will.
Experiences and challenges of engaging with other communities or publics (Table 2 )
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Explaining to the general population the public health reasoning for working with MSM (for instance, explaining that MSM are one of the key populations in Kenya at higher risk for HIV infection, and that together with, for instance, female sex workers, and injecting drug users, they are actively mobilised by national programmes to benefit from HIV prevention and antiretroviral therapy care programming) can be misinterpreted as promotion of homosexuality which is highly sensitive in many homophobic contexts in sub-Saharan Africa;
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The tendency in many communities for issues to be sensationalised, and more specifically for information about risk or vulnerability to be translated as MSM communities being ‘dangerous’ or a threat. Thus, for example, information about relatively high levels of HIV among MSM populations may lead to stereotypes that being MSM is associated with being HIV positive, and that MSM are guilty of driving the spread of HIV in heterosexual populations;
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Linked to the previous point, references in interactions to MSM as ‘them’ or ‘others’, positions MSM as being other than, and apart from, the general community, which can feed into segregation and discrimination against MSM;
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The introduction of secondary stigma to those who are working with and supporting care for MSM individuals and communities.
Researchers’ responsibilities in research and engagement
Towards a research agenda
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Who represents MSM in research engagement activities, and what are their links and relationships with diverse MSM communities? Research could include examining who is selected or puts themselves forwards as representatives, if and how they link with those they represent, and different stakeholders’ perceptions of strengths and challenges of working with these representatives. This work in particular would be strengthened by in-depth approaches aimed at understanding the range of MSM communities in research settings, including those who are least vocal and visible, and their priorities and concerns with regards to research, practice and representation.
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What does CE mean and how does it ‘work’ for diverse MSM and other communities across different contexts? This work could explore the potentially diverse goals that different actors involved in CE activities might have, if and how these goals are met and shift over time, and with what consequences (both positive and negative) for different individuals, their communities and research. This research could include examinations of how key principles for research involving MSM are developed and shared with different stakeholders in ways that are open, honest and safe, and if and how power relations between researchers and community members are shifted. The findings would strengthen researchers’ understanding of CE realities, and inform future CE strategies and processes.
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How can researchers and funders define their responsibilities towards research participants and the communities they are part of in varying contexts? What are researchers providing to participants and their communities for different kinds of studies involving MSM, on what basis, and what are different actors’ perceptions about the appropriateness of these actions and provisions? What does ethical analysis teach us about what researchers should provide, and the basis for these responsibilities? This should include consideration of how the following should be balanced: compensation of real costs and time; appreciation of research contribution; respectful engagement with participants; avoidance of undue inducement; potential to introduced unfairness and relationship problems between research participants and others; and the interest to transform structural drivers of inequity and stigma.
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How can health researchers’ engagements with diverse communities contribute to tackling the underlying structural factors that contribute to health problems, stigma and discrimination? Documentation of existing approaches by researchers themselves, and across their networks and collaborators, and strengths and challenges encountered could contribute to literature and ideas around research-policy-practice (‘research uptake’ or ‘knowledge transfer’) approaches for studies involving MSM. Policy analysis, including examination of what contributed to policy change and how, is likely to show if and how research findings and other advocacy efforts feed into change, and could suggest strategies for researchers and their collaborators.
Conclusion and lessons learned
Cross cutting issues in community engagement approaches
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The language used in conducting studies with MSM is ethically charged, and can have important implications for what CE takes place, and how it is understood and responded to by members of diverse communities.
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A broadly public health- or rights-based approach to CE may lead to differences in perspectives on appropriate forms of CE, with the former focusing on general expectations of socially responsible researchers in contexts of major shortages and inequities, and the latter on the very specific vulnerabilities and challenges faced by MSM and having a more politicised approach.
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Important points of convergence across the two approaches to CE include recognition that both approaches include a mix of often poorly articulated instrumental and intrinsic goals for CE; different individuals may take on different types of advocacy roles in different contexts and at different times, including through collaborations and networks; and debates about defining MSM communities and their representatives should not overshadow other critical aspects of ethical research, such as careful consideration of potential study risks, individual autonomy, and what responsibilities researchers have for study participants.
Developing CE strategies and being alert to potential harms
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Studies involving MSM need to carefully consider which communities to engage with, and what the different goals, activities, indicators of success and potential challenges might be for each. Given the complexities and sensitivities of defining communities and representatives, planning of these activities should begin as early as possible, and respond to unfolding realities. Specifically, researchers need to build capacity to engage appropriately with LGBT/GMT groups and other members of MSM communities, and with religious leaders, health workers, the media, policymakers, and advocacy groups.
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Ethical issues in CE include who represents diverse MSM needs and realities, and particularly the priorities and concerns of those who are least vocal and visible, and the potential to cause harm through labelling, breaches in confidentiality, increased visibility and stigma, and threats to safety. Further potential harms include a lack of transparency by researchers about the goals of research, and limits of what research can provide and achieve.
Researchers’ responsibilities and the limits of these responsibilities
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At a minimum, researchers have to ensure that research risks and disadvantages for participants are identified, and that there are mechanisms in place to ensure appropriate ancillary care, referrals for support or means of mitigating any harms identified.
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The health needs of MSM are often shaped by and connected to deep rooted structural injustice. Researchers have a responsibility to engage with these issues in locally appropriate ways, including through developing a good understanding of the contexts in which they work, and building appropriate links, collaborations and networks with those with appropriate knowledge and skills about how to make a positive change in policy and practice.
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Researchers conducting studies involving MSM may benefit from research ethics training, including a relevant (targeted) ethics curriculum. However, more broadly, it is vital that researchers build ethics support, advice and research into studies involving MSM from the earliest stage and throughout and after studies, to ensure that ethical challenges are identified and engaged with as and when they arise.