AMPLIFYING OUR VOICES:
Jamie David Howell (he/him)
In healthcare research, PPI takes a similar community-first approach, emphasizing that research should be done “with” and “by” communities, rather than “on” or “about” them 4 . This helps keep research relevant to the people it aims to support. In Ireland, the Pride at Home project- which explored ways of making home care more inclusive for LGBTQ+ older people- actively involved LGBTQ+ voices in the study design to ensure that its findings led to real-world improvements in healthcare services. LET YOUR VOICE BE HEARD You don’t need a PhD to make a difference. Getting involved in research can be as simple as filling out a survey. You could also take part in focus groups, interviews, or sit on advisory boards that help guide research. It can all lead to meaningful change for our community. You can learn more and look for opportunities to be part of projects through organisations such as IPPOSI 7 , and PPI Ignite 8 . And if you’re ever unsure about joining a study, don’t be afraid to ask the researchers how LGBTQ+ perspectives will be included and what the goals of their research are.
For much of history, LGBTQ+ communities have been the subjects of research rather than active participants in shaping it. Studies were often conducted by cisgender and heterosexual researchers who imposed their own assumptions, leading to incomplete or sometimes harmful understandings of LGBTQ+ lives. While this research has contributed to broader awareness, it frequently overlooked the voices of those it aimed to study. But things are changing. A growing number of research projects are centring LGBTQ+ voices- not just as participants, but as co-creators, ensuring that studies are not just about us, but guided by us. This shift isn’t just about representation- it’s about empowerment and creating research that leads to real, lasting change for our communities. Historically, LGBTQ+ identities were misunderstood, pathologized, and misrepresented. The American Psychiatric Association classified homosexuality as a mental disorder until 1973 1 , and the World Health Organisation only removed gender incongruence from its list of mental disorders in 2019 2 . Additionally, past research predominantly focused on white, cisgender, gay men, failing to represent the full spectrum of LGBTQ+ experiences. The lack of diverse voices led to our needs being misunderstood and misrepresented. A NEW ERA: “WITH” US, NOT “ON” US Today, LGBTQ+ researchers, healthcare workers, and community leaders are taking the lead, embracing approaches that prioritize collaboration. Two key approaches helping drive this change are Community-Based Research (CBR) 3 and Patient and Public Involvement (PPI) 4 . CBR involves researchers and community members working together at various stages of the research, from study design, to data collection and analysis. This approach ensures that the work is rooted in lived experience. One powerful example of CBR is the Trans Pulse Canada 5 study, which was designed by and for trans people, and directly influenced policy changes, addressing critical gaps in trans healthcare.
BEING PART OF RESEARCH ISN’T JUST ABOUT BEING COUNTED - IT’S ABOUT BEING HEARD.
It’s about making sure policies, healthcare systems, and support services are shaped by people who know what it means to live these experiences. Every time you contribute- whether through a quick survey or sitting on an advisory board- your participation helps drive progress. The future of LGBTQ+ research is one of empowerment, collaboration, and lasting change. By stepping forward and taking part, we ensure that our community is not just represented, but truly valued and respected. We deserve research that truly reflects our experiences. Let’s be the ones to lead it.
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