Sarah Bernays

This session highlighted community-led research by and with trans communities and women living with HIV (WLHIV) about their experiences, illuminating the expertise of those directly affected. They demonstrated how their knowledge should be central in shaping the responsive direction of science, policy and programming align with local need.

The session began with a commemoration to Shivananda Khan OBE, (1948-2013) a key founder of APCOM, Thailan: ‘a great man of honour’ and ‘a component of the engine of the train of progress….in Thailand and globally’. Bakita Kashada, University of Oxford, presented qualitative research conducted with and by WLHIV about how infant feeding choices are made by women living with HIV and their families. This study highlights the variability in how women, and clinicians, interpreted UK national guidelines. The guidelines are not currently reflected in participants’ experiences. The findings prompted greater clarity from policy stakeholders and informed tailored resources to support families. Arjee Restar, Washington University, presented her research programme focused on Trans Health, which is pioneering sustained and extensive community-research collaborations with the aim of ‘galvanising and ushering in the next generation of trans scholars to amplify informed work on health equity’. Emmanuel Onwe, I'm Emmanuel Foundation (USA), presented a review of the impacts of criminalization on the health risks of marginalised, adolescent groups (LGBTQI+, sex workers and people who use drugs) in Nigeria. Key findings include that hostile legislative contexts perpetuate and harden discrimination, which underpin structural risks but also undermine inclusion within decision-making processes.

As the session moderator articulated: ‘Communities are the real experts and not just beneficiaries’, advocating that space needs to be made for their expertise to be heard, amplified and integrated into the influential evidence-base. There was a vital celebration of trans people and adolescents as ‘scientists, researchers, experts and leaders about our own experiences.’ There is a need for funders to recognise the need to invest in infrastructure to support costs (including of time) to deliver meaningful community engagement. Institutional and funding environments need to enable the provision of adequate support to translate intention into equitable, effective and sustainable practices.