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DPUK are piloting a new project centring LGBTQIA+ people, to establish a cohort with mainly trans participants for longitudinal studies and to better understand how we characterise gender in our data curation.

Led by Dr Sarah Bauermeister, the Not Just a Missing Number study aims to look at factors that have traditionally excluded trans, nonbinary, and LGBTQIA+ people from research and, in turn, from medical care that caters to them. The cohort will be managed by a steering committee made up of a majority of trans people, ensuring that all questions about gender identity and expression are written by the community, for the community.

The first part of this project involves evaluating all of DPUK’s existing cohorts to understand the characterisation of gender. This will be run as part of DPUK’s research, and will establish the current ways that gender is recorded across our cohorts. In line with this, the team will also be carrying out a literature review on the historical gender diversity classifications. This aims to systematically review the history of gender classification across medical sciences, biosciences, universities, and industry, to attempt to identify whether there has yet been a turning point to make language more inclusive for trans people. This information will be used to identify what can be done moving forward to increase representation and educate communities to be more diverse and inclusive.

Alongside this, the Not Just a Missing Number study will begin to establish a cohort where the gender characterisation is clearly characterised by the LGBTQIA+ community. In order to do that, a steering committee of around 25 individuals (primarily trans people, with a focus on ensuring a broad diversity of other marginalised characteristics such as ethnicity and disability) will be created to inform gender classifications within this cohort.

The steering committee will also identify measures to track that are really important to the trans community, rather than having these be dictated by researchers who have, in some cases, no lived experiences of the long-term needs of LGBTQIA+ people. The longitudinal nature of this study means that the participants will be regularly followed up with low-commitment measures, to create a long-term dataset of variables including sociodemographics, biomedical outcomes, lifestyle factors, and wellbeing. Whilst this cohort will be exclusively made up of LGBTQIA+ people, making it a single population, it will have enough comparable measures to existing cohorts for us to use existing data from DPUKs datasets for validity analyses.

Another aspect of this broad project is studying gender diversity in higher education, including scoping exercises for universities, looking at mental health and wellbeing policies for LGBTQIA+ students. Again guided by the steering committee, who are very familiar with the pressures that LGBTQIA+ and particularly trans people experience when entering higher education, this aims to gather data about current disparities of experiences and to advise on how to better include and advocate for this community and enabling them to thrive in higher education.

PI Dr Sarah Bauermeister (she/her) says, ‘I’m very passionate about combatting inequality, which drives a lot of my work – from running dementia-informing art workshops for ethnic minorities, advocating for equality with access to a variety of hearing aids, and supporting women in science, particularly after post-doc level in elite institutions. I also have a family member who is in the trans community, and whilst I’ve been supportive of his journey I know from the many accounts of his friends that this is rare. If people are struggling within their families, as well as within social and medical settings, it’s hard to be seen and heard. By making this project community-led – I see myself solely as the link to the scientific community, and will likely be the only cis person on the steering committee – I hope we can do essential work of widening inclusion of LGBTQIA+ people in medical research, and in turn provide better long-term health outcomes.’

Jamie King (he/they), Founder of FORT (a new non-profit queer creative studio in London) and Volunteer for Museum Of Transology and Trans Pride UK, says ‘In 2023, LGBTQIA+ (and particularly trans) communities are facing increasing rates of violence, negative media attention, legal attacks, medical negligence, and even calls for eradication. The intentional and systematic exclusion of trans people in academia has led to appallingly little data to understand our medical and social experiences, whether unique to our community (ie. gender affirming care) or very normal (routine medical care). It's not enough to simply try to accommodate us within current academic systems. This study is urgently needed to understand our community's unique needs, as well as the impact of systemic abuse and negligence. It also has an incredible opportunity to set a precedent which improves how oppressed groups are treated and involved in academia.’

The next steps for the Not Just a Missing Number study involve establishing the steering committee. Once the committee has had their first meeting about the aims of their project, Dr Bauermeister will use their essential input into shaping plans for creating the cohort.