This Pride Month see the life behind every number
This Pride Month, the most useful thing our industry can do is ask a hard question: who do we enrol in research and who do we leave out? Representation is not a gesture. It is how medicine advances for everyone and it has always taken advocacy to move it.
In a recent study, researchers sat down with a group of LGBTQ+ patients with cancer and asked a simple question: had any of them ever taken part in a clinical trial? Nearly all of them knew what trials were. Every one of them said they wanted to help advance research. Not a single one had ever been included. 1
Willing to help, rarely asked
100%
wanted to contribute to research
In one study of LGBTQ+ cancer patients
None
had ever taken part in a clinical trial
The reason is not reluctance. Because they are rarely asked and rarely even recorded, these patients are systematically missed, and when a whole group is absent the science is left incomplete. It becomes harder to know what a result really means, harder to spot safety signals that may surface only in some patients, and easy to miss the factors that could point to more effective, better-tailored treatment.
See the person,
not the category.
Medicine works best when it understands who is it for and lets people define that for themselves.
People, not numbers
Inside a protocol, it is easy to let enrolment become arithmetic: a target, a curve or a site running behind. But every figure on a recruitment chart is a person whose future care depends on whether people like them were ever studied. When whole groups are absent, the consequences are not abstract. For LGBTQ+ patients the blind spot runs deep: across two decades of medical literature, only about one article in a thousand addressed their health at all. 8,10
For decades, medicine barely looked
Of medical articles published 1980-1999, about 1 in 1000 addressed LGBTQ+ health.
Representation is accuracy, not generosity
There is a hard scientific reason this matters beyond fairness. The gaps are concrete, and anyone who has run a study will recognise them:
- Forms and eligibility criteria built around a binary idea of sex and gender can miscount patients or quietly turn them away
- Criteria written for an “average” patient can leave sites unsure how to engage anyone who does not fit typical profiles or who face barriers to accessing healthcare. And we know these barriers can delay diagnosis and treatment, meaning patients who may have been eligible end up being excluded
None of this is an edge case. It is a sign that many guidelines still rest on incomplete evidence and outdated assumptions about the patients they serve. Representation is not a kindness extended to a minority. It is the condition under which a result is true for the next patient through the door. 9
It takes advocacy to move science
The reforms we now take for granted such as faster review of urgent therapies and the expectation that patients help design the studies meant for them, were won by people who refused to wait, leaving behind methods that reshaped research for everyone. 11,12
Those same methods still work. Oncologists studying LGBTQ+ enrolment today point to community partnership, trusted messengers and trial designs that do not force people to misrepresent themselves to take part, and note, pointedly, that these approaches succeed but have not yet been applied everywhere. Liam Paschall, a transgender patient advocate, told an industry audience that we are still “missing important data” on whole communities; fewer than one in a hundred US trials include anyone who is transgender or nonbinary, though they make up about the same share of the population. 2,7,6,13
People are not reluctant to be counted. Too often, they are simply not counted at all.
The work worth marking
None of this is fixed by one company, and we won’t pretend otherwise. But helping sponsors reach the right patients is the work we do every day. As a mid-sized CRO we pair the global reach of a large partner with the flexibility and personal attention of a smaller one, and tailored patient recruitment and retention sits at the centre of how we partner, not as an afterthought.
Our offer this Pride Month is a practical one: if you are designing a study, talk to us early about who it is for and who it might miss. Better recruitment is something we can plan for together and something we are glad to guide. Behind every number in a trial is a life, and helping more of those lives into the room is work worth doing, this month and every month after it.
Sources and further reading
- Journal of Clinical Oncology, “Understanding barriers to LGBTQ+ cancer clinical trial participation: a qualitative inquiry,” 2023. (link)
- Cancer Therapy Advisor, “Justice in Research: SGM Patients’ Underrepresentation in Cancer Clinical Trials,” 2026. (link)
- JMIR / PMC, “Racial Disparities in Awareness and Perceptions of Oncology Clinical Trials (mychoice study).” (link)
- National Academies (NCBI Bookshelf), “Why Diverse Representation in Clinical Research Matters.” (link)
- PMC, “A roadmap for improving representation in clinical trials” (CAFÉ study). (link)
- PAN Foundation, “Clinical trials, sex, and gender.” (link)
- ACRP, “Clinical Trials Must Evolve to Better Serve the LGBTQ+ Community.” (link)
- PMC, “Representation and Generalizability in Clinical Research: Back to Basics.” (link)
- British Journal of Clinical Pharmacology, “Drug–drug interactions between gender-affirming hormone therapy and antiretrovirals,” 2024. (link)
- Center for American Progress, “How to Close the LGBT Health Disparities Gap.” (link)
- HISTORY, “How AIDS Activists Fought for Patients’ Rights.” (link)
- BioSpace, “How HIV/AIDS Activism Led to Broader Patient Activism in Clinical Trials.” (link)
- PLOS One (PMC), “Feasibility of voluntary SOGI collection in clinical research,” 2025. (link)
Disclaimer
This material is for informational purposes only and reflects a high-level summary and interpretation of publicly available information. It does not constitute scientific, medical, or regulatory advice, nor does it endorse any investigational or commercial product. Figures cited reflect the specific studies referenced.
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