LGBTQ+ public involvement panel choose priority themes for research into health of sexual and gender minority populations

Health services delivery, the prevention of health problems, and the intersectionality of sexual orientation and gender identity with other disadvantages are top priorities for LGBTQ+ health research, according to a new research prioritisation exercise carried out with members of the public.

The topics were chosen from a list of healthcare research themes by a panel of people identifying as Lesbian, Gay, Bisexual, Transgender, Queer or other identification such as non-binary (LGBTQ+).

The public involvement panel ranked seven themes into priority order, to help guide researchers focusing on health inequalities in LGBTQ+ populations. The ranking was done at an online workshop conducted in 2020 by the Primary Care Unit (University of Cambridge) and Crowe Associates.

There are big disparities in health and healthcare outcomes for LGBTQ+ populations, for example, in multimorbidity, cancer, mental health, substance use, health screening, and experiences of healthcare. More evidence on the needs and concerns of LGBTQ+ people using healthcare systems is needed to help researchers to understand what the next research priorities should be and how to address the disparities. The prioritised themes identified in this exercise are a step towards a better understanding of LGBTQ+ perspectives on health research priorities.

The prioritisation work was carried out with 14 members of the public that identified as LGBTQ+, and led by researchers Dr Catherine Saunders (Primary Care Unit, University of Cambridge) and Sally Crowe (Crowe Associates). The research team presented the list of seven themes, which had emerged from their ‘rapid evidence review’ of already-published priorities for LGBTQ+ healthcare. Workshop participants then held in-depth discussion about the relative importance of each theme, before reaching a consensus on the priority topics.

Participants said the first priority, the ‘Health Services Delivery’ theme, was important, citing common experiences of challenges as healthcare users, like this one:

“Primary care (GP) is the front door, coming out can be exhausting and potentially risky”.

Research into effective training, guidance and support for front line workers in health and social care was considered important. The balance of ones’ identity being acknowledged, but not pathologized, was also clear. One participant said:

“Being LGBTQ+ is not an illness’.

Mental health was singled out as very important.  Finally, a focus on older people (and inclusive care homes) was felt to be a dimension also important in this theme.

For ‘Prevention’ research, priority theme number two, many participants highlighted the importance of research to improve the overall health of LGBTQ+ people, emphasising the value of  cancer screening and HIV prevention, for example. Participants explained the importance of bullying and violence, substance misuse and stress, which were thought to be generally under reported and also fell under this theme of the prevention of ill health.

The particular challenges and intersectionality of LGBTQ+ identities with other disadvantage, ranked as research priority number three, were vividly described in the workshop, with particular emphasis on race and inequalities.

A final important dimension of this work was methodological, around how to set up an inclusive research prioritisation exercise.

The challenge now to our research team, the wider LGBTQ+ research community and to research funders is to commission, plan and carry out research that addresses these priorities. For our part, we are working on future research ideas, building on these prioritised themes, and we are continuing to consult with this group of people who have shared their experiences and insights with us so generously." – lead researcher, Dr Catherine Saunders

This work was funded by the National Institute for Health Research (NIHR) School for Primary Care Research. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care

Read the article

Crowe S, Barker E, Roberts M, Lloyd L, de Barros CM, Rebelo-Harris B, Meads C, Saunders CL (2021) Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research themes Research Involvement and Engagement. 24 September 2021

More from Dr Catherine Saunders

Dr Saunders’s research includes work on different aspects of health and healthcare for LGBTQ+ populations: some related papers are listed here.

• Saunders CL, Massou E, Waller J, Meads C, Marlow L, Usher-Smith JA (2021) Cervical screening attendance and cervical cancer risk among women who have sex with women. J Med Screen 28(3): 349-356
• Saunders CL, MacCarthy S, Meads C, Massou E, Mant J, Saunders AM, Elliott MN (2021) Long-term conditions among sexual minority adults in England: Evidence from a cross-sectional analysis of responses to the English General Practice Patient Survey. BJGP Open. DOI: 10.3399/BJGPO.2021.0067
• Saunders CL, Flynn S, Massou E, Lyratzopoulos G, Abel G, Burt J (2021) Sociodemographic inequalities in patient experience of primary care over time: analysis of over 5 million responses to the General Practice Patient Survey in England between 2011 and 2017. J Health Serv Res Pol 26(3):198-207
• Saunders CL, Meads C, Abel GA, Lyratzopoulos G (2017) Associations between sexual orientation, and overall and site-specific diagnosis of cancer: evidence from two national patient surveys in England. J Clin Oncology 35(32):3654-3661

Contact

Lucy Lloyd, Communications