In order to produce relevant and useful knowledge, health research can no longer take place above communities and sometimes even without them. It must be carried out with them or even by them.
Florent Jouinot, Project Assistant, Swiss AIDS Federation
In a context where the health issues faced by LGBTIQ+ people remain marked by inequality, stigmatisation and invisibility, the way in which research is designed, conducted and used must be questioned.
One of the first questions asked was: who decides what research questions are asked? Even today, research topics are too often defined by authorities or academic entities without any real consultation with communities. Yet community leadership – or at the very least shared governance between communities and institutions – is essential for producing knowledge that is truly useful and empowering.
Communities are not simply ‘objects or subjects of study’: they bring together a multitude of people who possess knowledge and have the power to act on their lives, their health and, more broadly, social change, as has been proven in the past, particularly in the field of health and especially in the face of the HIV epidemic. They are therefore entitled to set the conditions for their participation in research: what types of research they agree or disagree to contribute to, in what context, according to what values, for what purposes and with what benefits, including immediate benefits for themselves.
Mixed methodologies (quantitative and qualitative) were strongly recommended, based on fieldwork from the outset and throughout the process: understanding the realities experienced and their determinants, co-constructing data collection tools, involving communities in data collection to promote diversity and representativeness of samples, but also in data analysis and interpretation of results, as well as in the formulation of recommendations or the definition of actions to be taken.
This approach not only provides better data – more detailed and more representative – but also maximises the impact of research on public policy and community action.
It is a question of moving away from the traditional research approach, which tends to consider health from an individual perspective, without taking into account systemic issues; of isolating people, without taking advantage of the power of solidarity and collective mobilisation; and placing the responsibility for their health care on them, when the accessibility and adequacy of health services are the responsibility of systems that give them little or no say.
Finally, research must produce directly usable results: for advocacy, the design of services and offerings, and even for informing communities themselves so that they can think about and develop appropriate responses to their needs, including independently, individually or collectively.
The issue of funding has been raised several times. Participatory research takes time and requires significant human and material resources, a large part of which is borne by the communities themselves (time spent, transport costs, etc.). However, by setting research objectives or conditions, funders can sometimes hinder community involvement and innovation. It is therefore crucial that funding mechanisms are designed to guarantee the autonomy and community relevance of the projects supported. The capital mobilised by research and generated by it must, as far as possible, benefit the communities (economic, intellectual and symbolic capital, etc.).
Knowledge (skills and expertise) derived from communities must no longer be marginalised, exploited or even plundered, but recognised, strengthened, protected and valued. This requires academic recognition, but also concrete benefits: remuneration for those involved, funding for community organisations and projects, formal validation of knowledge, use of research results for the (immediate) benefit of communities, etc.
One of the major contributions of the discussions was to remind us that research is not neutral and risk-free. Depending on how it is initiated, conducted, presented or used, it can reinforce stigma or even endanger people. The results of some studies may be taken out of context and exploited by hostile actors to fuel stigmatising, discriminatory or pathologising discourse, particularly psychiatric discourse.
There is also the issue of data security – a major challenge in the digital age – and the impact of political reversals on the people concerned. People whose identity or life circumstances contravene moral or even legal norms (illegal residence, undeclared work and/or sex work, use of prohibited substances) could be identified, targeted for discrimination and have their fundamental rights challenged or even their very existence threatened.
How can participatory community research be conducted when the rights and even the existence of LGBTIQ+ people are under attack, when funding is scarce, and when academic freedom itself is threatened?
More than ever, it is necessary to strengthen communities' capacities for self-organisation and knowledge production. Community-based research then becomes a tool for resistance and empowerment. It makes inequalities visible, gives a voice to the most marginalised and/or precarious people, and proposes concrete responses to defend rights and improve the living conditions and, consequently, the health of communities and individuals.
Conducting health research with, by and for LGBTIQ+ people is not just a question of method and ethics, it is a necessary political action.
The second conference on LGBTIQ+ health took place in Brussels from 21 to 23 May 2025. The diverse conference brought together experts from Europe and Central Asia and presented innovative projects and the latest research findings.