Primary Care Unit Research Briefing
LGBT+ people are more likely to be living with long-term physical or mental health problems, and more likely to report poorer healthcare outcomes. University of Cambridge statistician Dr Catherine Saunders has explored these inequalities over the last five years by studying health data provided by large numbers of people, painstakingly uncovering evidence on the health of sexual and gender minority adults.
Although Katie explains that the story of LGBT+ health has only just begun to be told, her research provides new insights into long term conditions, cancer, health screening, mental health and experiences of healthcare for LGBT+ people.
Lots more needs to be done but there are already clear messages for medical staff and for the NHS coming out of this work.
This briefing introduces key findings from Katie and her fellow researchers.
We’ve used the LGBT+ acronym to indicate we are talking about lesbian, gay, bisexual, transgender people and other identities including non-binary and asexual. Most of this research so far considers only lesbian, gay and bisexual adults, although some recent and forthcoming work is beginning to research trans and non-binary health as well.
What have we found out so far?
Sexual minority adults in England are more likely to have long-term health conditions: We found conditions like mental health problems, neurological conditions, dementia and back issues are more prevalent among sexual minority adults. Bisexual adults often have the highest risk.
Young sexual minority adults, especially young sexual minority women, are much more likely to be living with long term health conditions.
This evidence means that GPs should pay particular attention to prevention, screening, and care for long-term conditions in their sexual minority patients, even in early adulthood.
The distribution of cancer sites (on our bodies) don’t vary substantially by sexual orientation: we found gay or bisexual men are over-represented among men with Kaposi’s sarcoma, anal, and penile cancer. Lesbian or bisexual women are over-represented among women with oropharyngeal cancer. These are all HIV or HPV associated cancers. These findings also indicate that cervical cancer risks look similar across women of all sexual orientations.
HPV vaccination is important in both heterosexual and sexual minority populations.
There is relatively low uptake of cervical screening among women who have sex with women. There have been inconsistent messages in the past about whether lesbian women need to attend cervical screening programs; our findings highlight the importance of improving uptake of cervical screening among all women who have sex with women (and also breast screening among women who have never had sex).
LGBT+ people are more likely to have mental health problems, especially younger people and those who are bisexual: we know from our research looking at mental health that lesbian, gay and bisexual adults are more likely to be living with long term mental health problems. We also know that these inequalities are largest at younger ages, and for people who are bisexual.
Some of the stand-out facts are very stark: over 20% of women aged 18-24 who are living with long-term mental health problems are lesbian, gay or bisexual. Bisexual adults, especially young bisexual females, report the highest rates of chronic mental health problems.
Younger LGB women have five times the odds of reporting chronic mental health problems of their heterosexual peers. Nearly a third of LGB women aged 18–24 report chronic mental health problems.
Often the first port of call for people experiencing mental health problems is their GP. So healthcare staff – especially those in primary care who may have the best chances to spot problems – should look out for opportunities to support the mental health of their sexual minority patients.
LGBT+ people’s experiences of healthcare haven’t changed much in the last decade: we looked at whether inequalities in experiences of primary care are changing over time. We found that although access to healthcare got worse for everyone in the last decade, the inequalities that we saw for lesbian, gay and bisexual adults didn’t really change very much.
Most gender and gender minority disparities in primary care don’t come from biased care provided by GPs or from poorer data quality. Indeed, often primary care is the place where these disparities are addressed.
There’s a complex story about the intersection of social pressures (like experiences of minority stress, violence against women or caring responsibilities) with health and wellbeing.
Identifying and overcoming inequalities in health require us to develop a greater understanding of the impact of gendered behaviour, its impact on clinical care, and the resultant biases in the collection and interpretation of healthcare data.
Being a numbers detective
There are big challenges in working with statistics to work out what’s going on for LGBT+ people’s health.
We looked at whether UK Biobank, a large data resource, might be helpful to answer some of these research questions. The respondents who provided the data were asked about their sexual behaviour rather than their sexual orientation and gender identity. That makes it hard to get a full picture – but we suggested some possible approaches for researchers.
Also, we’d like studies to follow the same people over time to understand how things change and how best to tackle inequalities.
Another difficulty is deciding how best to handle gaps in the story told by the data. For example, how should we handle respondents identifying with the ‘Something else’ (SE) and ‘Don’t know’ (DK) categories often found in survey questions about sexual orientation? We have looked at whether we can predict people’s sexual orientation from these answers and found that we can: we think that about 94% of SE respondents and 20% of DK respondents might identify as a sexual or gender minority adult.
The data have improved a lot in the last decade; the work that I am doing now was only just starting to be possible 10 years ago.
People are more likely to answer a survey question asking about their sexual orientation now compared with around 2010 when these questions first started appearing!
We have explored and used lots of different data collections and we are finding ways to describe and trace the health and healthcare outcomes of LGBT+ people.
Are we asking the right questions?
Research questions are often set by funders, researchers, or health professionals and the clear and inclusive involvement of the public in research priority decisions is less common – but vitally important!
Although my research is mostly based on the analysis of healthcare data, public involvement is really central to what I try to do. Public involvement is the process of working with the public as part of our research, not as participants in a research study.
We worked with a group of lesbian, gay, bisexual, transgender plus (LGBT+) public participants to prioritise themes for health research. The top three themes chosen by the panel were:
healthcare services delivery, particularly primary care;
how to prevent ill health, including cancer screening and HIV to mental health;
how to understand and address multiple challenges for people identifying as LGBT+ (experiencing racism as well as homophobia or transphobia, and how inequalities vary by age, for example). This research looking at multiple challenges is sometimes called intersectionality in scientific research.
My aim is to carry out research which addresses these priorities.
What’s the point of all this research?
For me the biggest challenges to think about are how to carry out research that can directly lead to improvements in health – it’s not enough just to describe what is going on, the research needs to have a clear path to also making things better.
There isn’t a simple solution to improving health for LGBT+ people. It’s not a linear path from analysing routine data (which is mostly what I do) to addressing LGBT+ health inequalities. But certainly there are some places where I think this research can help.
Sometimes our research leads to direct recommendation for policy – for example from our research which looked at cervical screening uptake among women who have sex with women.
Sometimes it leads to areas where we might be able to make recommendations for clinicians or practitioners, for example highlighting the importance of considering sexual orientation in primary care consultations about mental health problems.
I think my job is to ask the right research questions, and make sure that we have the data we need to answer them (and to answer them well).
We are just starting a project looking at health outcomes and experiences of primary care for people who are non-binary and transgender, which will keep me busy in the next few months.
Please tell me what you think
One of the most important dimensions of this research is ensuring the research process itself is inclusive and non-discriminatory; making sure that I am asking and trying to answer the right questions, and listening to what people think.
So please do get in touch – I always love talking to people about this work!
Email Dr Catherine Saunders: firstname.lastname@example.org
Via twitter: @drclsaunders
Sources of help and support
Thinking about LGBT+ health and healthcare and the findings from this research can be difficult. Here are some organisations that may be able to offer help and support.
LGBT Foundation is a national charity delivering advice, support and information services to lesbian, gay, bisexual and trans (LGBT) communities. Helpline: 0345 3 30 30 30
Stonewall. Information and support for LGBT communities and their allies. Contact Stonewall’s Information Service FREEPHONE 0800 0502020 (9.30 – 4.30, Monday – Friday)
List of research papers discussed in this briefing
Long-term conditions among sexual minority adults in England
This study analysed 1.35 million responses to the nationally representative English General Practice Patient Survey and found most long-term health conditions were more prevalent among sexual minority adults; bisexual adults often had the highest risk. The inequalities facing sexual minority adults generally did not vary by deprivation, ethnic group, or region, but young sexual minority adults, especially young sexual minority women, were much more likely to be living with long term health conditions.
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
Associations between sexual orientation and diagnosis of cancer
To learn more about whether the distribution of cancer sites varies by sexual orientation, we analysed data from English General Practice Patient Survey responders (three quarters of a million responders) and from hospital-based English Cancer Patient Experience Survey responders (a quarter of a million responders). This large-scale evidence shows that the distribution of cancer sites does not vary substantially by sexual orientation, with the exception of some HPV- and HIV-associated cancers. These findings again highlight the importance of HPV vaccination in heterosexual and sexual minority populations.
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
Cervical screening attendance and cervical cancer risk among women who have sex with women
This research found lower uptake of cervical screening among women who have sex with women and also confirmed the risk of human papilloma virus (HPV) transmission associated with lesbian sex. HPV is a main cause of cervical cancer. Together, these findings highlight the importance of policy interventions to improve uptake of cervical screening among women who have sex with women.
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
Sexual minority adults in England have greater risk of long-term mental health problems
This study looks at chronic mental health problems among sexual minority adults, using data from the nationally representative English General Practice Patient Survey. We found that bisexual adults, especially young bisexual females, reported the highest rates of chronic mental health problems and younger women had five times the odds of reporting chronic mental health problems of their heterosexual peers. Nearly a third of women aged 18–24 reported chronic mental health problems. So we think healthcare staff should look out for opportunities to support the mental health of their sexual minority patients.
MacCarthy, S., Saunders, CL., Elliott, MN. (2022) Sexual minority adults in England have greater risk of long-term mental health problems: Variation by age, socioeconomic status and race/ethnicity. LGBT Health
Sociodemographic inequalities in patient experience of primary care over time
This analysis of over five million responses to the General Practice Patient Survey between 2011 and 2017 found no substantial improvements in inequalities for primary care patients between 2011 and 2017. Access is getting worse everywhere and declining faster at those practices that serve deprived populations. We also found a slight increase in access difficulties reported by lesbian, gay and bisexual women and men.
Saunders CL, Flynn S, Massou E, Lyratzopoulos G, Abel G, Burt J (2021) Sociodemographic inequalities in patients’ experiences of primary care: an analysis of the General Practice Patient Survey in England between 2011 and 2017. J Health Serv Res Pol 26(3):198-207
It’s complicated! Tackling the complexity of gender bias in primary care
In this article, we explain that most gender disparities in primary care come not from biased care provided by GPs or poorer data quality; they form a more complex picture where health and societal pressures (for example, violence against women or caring responsibilities) intersect. Identifying and overcoming these disparities will therefore require greater understanding of the impact of gendered behaviour, its impact on clinical care, and the resultant biases in the collection and interpretation of healthcare data.
Berner A, Lund J, Saunders CL (2021) Tackling the complexity of gender bias in primary care. BJGP 71(708):296-297
Using UK Biobank for sexual minority health research
UK Biobank is a research study which recruited, and is now following up, over half a million adults aged between 40 and 70. When participants were recruited they were asked about their history of sex with both women and men. In this research, we compared their responses to this question to responses from another survey, the third National Survey of Sexual Attitudes and Lifestyles, and found the estimates were broadly comparable. We also provide some advice to researchers on how to use UK Biobank in future research to explore disparities in health outcomes experienced by lesbian, gay and bisexual adults.
Saunders CL, Massou E (2021) Using UK Biobank for sexual minority health research. J Comp Eff Res 10(13) 1001-1010.
Increased reporting of sexual minority orientation from 2009 to 2017 in England
Sexual minority adults experience considerable mental and physical health disparities compared to their heterosexual counterparts, but changes in these disparities over time may, in part, reflect changes in how the same people self-identify their sexual orientation. This study compared data analyses from the Longitudinal Study of Young People in England and the General Practice Patient Survey (GPPS), and we found changes in health disparities that may reflect people newly identifying as a sexual minority as well as longitudinal changes in those long identifying as sexual minority adults. We’d like to see research to measure the health of both early- and late-identifying sexual minority adults, as their health care and policy needs may differ.
MacCarthy S, Saunders CL, Elliott MN. Increased Reporting of Sexual Minority Orientation from 2009 to 2017 in England and Implications for Measuring Sexual Minority Health Disparities (2020) LGBT Health 7(7):393-400
Some of the challenges for data scientists trying to study sexual orientation-based health inequalities
Researchers studying sexual orientation-based disparities have to decide how best to classify respondents identifying with the ‘Something else’ (SE) and ‘Don’t know’ (DK) categories often found in survey questions about sexual orientation. Here, we used the sociodemographic information and follow-up questions for SE and DK respondents in the 2013–2014 National Health Interview Survey to generate predicted probabilities of identifying as a sexual minority adult. We predicted that about 94% of the 144 SE respondents and 20% of the 310 DK respondents would identify as a sexual minority adult, with higher probabilities for younger, wealthier, non-Hispanic white, and urban-dwelling respondents.
Elliott MN, Dahlhamer JM, MacCarthy S, Beckett MK, Orr N, Guerino P, Agniel D, Saunders CL, Schuster MA, Ng JH, Martino SC. (2019) Using Ancillary Sociodemographic Data to Identify Sexual Minority Adults among Those Responding “Something Else” or “Don’t Know” to Sexual Orientation Questions. Medical Care. 57:e87-e95.
Are we asking the right questions? Working with the LGBTQ+ community to prioritise healthcare research themes
This article explains how we reviewed published research priorities on LGBT health, grouped the priorities into themes and discussed them at a workshop with a group of LGBTQ+ people.
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.
This research briefing was prepared by the Primary Care Unit, University of Cambridge.
With thanks to the Public Engagement Fund at the University of Cambridge who supported our work to compile this online briefing.
Top image: thanks to Pexels