This blog by Dr Katie Saunders explores her recent work involving members of the public in setting priorities for future LGBTQ+ health research.
I am a statistician working in the Primary Care Unit at the University of Cambridge. In addition to my work supporting students and researchers within the PCU, I am beginning to develop an independent applied programme of research in LGBTQ+ health. Initially this work highlighted the risks of tonsil cancer for lesbian and bisexual women (discussed in this article in Cosmopolitan(!)), and has moved on to work looking at imbalances in cervical screening uptake and cervical cancer among women who have sex with women. I have also been involved with more technical statistics and survey methods questions for studying LGBTQ+ health inequalities.
From a primary care perspective we recently found that these inequalities haven’t yet improved despite several initiatives tackling the known disparities in healthcare experience for lesbian, gay and bisexual adults. This highlights the importance of ongoing work in this area and the need for collecting data on sexual orientation.
From an academic perspective I work in LGBTQ+ health research because the inequalities that exist are substantial, and the area is relatively under-researched; there is a need for research and evidence to inform how to address these inequalities.
I’m a straight married woman with three children; my older sister also has three kids, and is married to a woman – she is probably the biggest non-academic influence on my research; her enthusiasm and encouragement that this work is important and in the way that older sisters do, correcting me when she thinks that I am getting things wrong. It also stems from thinking about how sexual orientation may have influenced differences between us in our experiences of health and healthcare throughout our lives.
Being a statistician and embedded in the world of healthcare data means that I am good at working out how we answer important research questions with data that have already been collected. However, I am also aware that beyond the influence of my sister (!) any research I do needs broader LGBTQ+ public involvement. This is particularly important given the data-focused statistical nature of the research that I do – it’s not a public facing role.
As part of an SPCR launching fellowship from 2020 to 2021 I worked with Sally Crowe, an independent facilitator of public involvement in research. We carried out a prioritisation exercise for LGBTQ+ health research to inform future research funding applications.
Following national and local advertising we recruited a panel of 14 people who identified as LGBTQ+ and were interested in research. They prepared for and took part in an online workshop to discuss and prioritise seven research themes (health services delivery, prevention, health and social policy, intersectionality, Developing or evaluating treatments or interventions, LGBTQ+ and condition specific issues) that I had assembled from the results of a rapid literature review.
They entered into the exercise with spirit and enthusiasm, discussions were robust, relevant and at times it was painful to hear people’s experiences of health and healthcare from a marginalised perspective. We are still writing up the work, but the importance of primary care came through in the discussions as the first point of contact with health services. Over half of the 14 have kept in touch via email and some have helped in writing up the findings of the exercise.
I hope to continue to work with the group in future research, and know that they are keen to see outcomes from our work together, so that keeps me on my toes!
Please do not hesitate to get in touch with me at email@example.com if you are interested and would like to get involved or to hear more about the results in the future.