Making Everyone Count: 5 Actions the NHS Can Take to Bridge the LGBTQ+ Data Gap 

As part of Pride Month 2025, we are shining a light on the healthcare system experiences of LGBTQ+ communities in England and the systemic barriers they still face. This article sets out to highlight how incomplete collection of LGBTQ+ status within NHS IT systems exacerbate those inequalities and outline practical steps that the NHS can take towards truly inclusive care. 

Trans people in England face up to five times higher risk of long-term mental health conditions compared to cisgender individuals. Likewise, LGB+ adults experience more than twice the risk of suicide and self-harm compared to their heterosexual peers. Why are LGBTQ+ people experiencing worse mental health outcomes? Part of the reason is that within the healthcare system, LGBTQ+ people often face systemic barriers.  

At least 16% of LGBTQ+ individuals who accessed or tried to access public health services reported a negative experience due to their sexual orientation, while 38% reported negative experiences due to their gender identity.  

LGBTQ+ status is not consistently or accurately captured in NHS systems 

These negative experiences are compounded by systemic data gaps that make LGBTQ+ health needs harder to see and address. This is due to a lack of standardised data collection, insufficient staff training, and patient reluctance to disclose information amid fears of discrimination or data misuse. While a national standard for recording sexual orientation was introduced in 2017, there remains no equivalent national standard for gender identity or trans status. Many clinical IT systems continue to conflate gender with biological sex, offering limited or inconsistent recording options. Consequently, information about gender identity is inconsistently collected, often entirely missing, and poorly coded within NHS records. 

What does inaccurate or incomplete data collection lead to?  

For LGBTQ+ patients, consider these practical implications that lead to missed or inappropriate care:  

• Transgender men are listed as male in NHS records might never receive cervical cancer screening invitations, missing out on vital preventative care.  

• Transgender women recorded as female risk missing prostate cancer screening.  

• Transgender people can face barriers when accessing suitable contraceptives.  

• Updating gender markers can trigger the issuance of a new NHS number, causing patient medical histories and past care records to become fragmented or lost, leading to confusion, redundant testing, and gaps in care.  

5 Actions to Bridge the LGBTQ+ Data Gap 

The NHS and healthcare leaders can implement targeted steps to improve how LGBTQ+ data is handled:  

1. Standardise gender and sexual orientation data fields across all NHS systems. A national standard for gender identity, parallel to the existing sexual orientation monitoring standard, should be established and rigorously implemented.   

2. Ensure patient records remain intact during transitions and identity updates, ending the practice of assigning new NHS numbers that disrupt continuity of care.  

3. Train frontline staff in inclusive data practices. Education must address sensitivity, accuracy, correct pronoun use, and respectful data collection methods to foster patient trust and encourage accurate information sharing.   

4. Continuously monitor and audit data quality, holding providers accountable for meeting improvement targets. High quality, complete LGBTQ+ data is critical for identifying disparities and tracking progress over time.  

5. Involve LGBTQ+ communities in designing data solutions. Engagement with LGBTQ+ individuals, patient groups, and advocacy organisations will ensure data practices reflect real-world issues, enhance treatment, and demonstrate respect for lived experiences.  

Inequalities hidden, care uneven 

If the NHS fails to accurately record LGBTQ+ identities, these communities will remain invisible in the system, their needs overlooked, and disparities left to widen. A recent review found that only 22 of England’s 42 Integrated Care Systems strategies even mention LGBTQ+ populations, and even fewer actively address their specific health needs. Closing the LGBTQ+ data gap isn’t optional; it’s urgent. It’s a vital step toward addressing the persistent health inequalities that too many still face. Without accurate data and inclusive practices, we risk leaving entire communities behind — and that’s a failure no healthcare system can afford. Only with accurate data and inclusive practices, healthcare providers and planners can ensure that no patient is left invisible, and that every community counts. 

As with another project we’ve delivered, our work with the Veterans Covenant Healthcare Alliance (VCHA) has revealed how the absence of systematic data collection on underrepresented groups such as veterans can result in overlooked inequalities and unmet care needs. While census data offers some insight, there is currently no nation requirement to record veteran status. Veterans are known to experience significant higher rates of both mental and physical health issues compared to the general population. However, to develop targeted, effective solutions and inclusive practices that reduce health inequalities, a deeper understanding is essential. Achieving this requires detailed data collection that allows for analysis of the interplay between demographic, health and social factors driving these outcomes. 

References

Batty, D. (2025, April 9). Suicide and self-harm risk twice as high in LGB+ adults in England and Wales. The Guardian. https://www.theguardian.com/uk-news/2025/apr/09/suicide-self-harm-risk-lgb-adults-lesbian-gay-bisexual-ons-england-wales 

Braybrook, D., Rosa, W. E., Norman, C., Harding, R., & Bristowe, K. (2025). The inclusion of LGBTQ + people within UK health policy: A critical discourse analysis. International Journal for Equity in Health, 24(1), 88. https://doi.org/10.1186/s12939-025-02446-x 

Brooks, H., Llewellyn, C. D., Nadarzynski, T., Pelloso, F. C., De Souza Guilherme, F., Pollard, A., & Jones, C. J. (2018). Sexual orientation disclosure in health care: a systematic review. The British journal of general practice: the journal of the Royal College of General Practitioners, 68(668), e187–e196. 
https://doi.org/10.3399/bjgp18X694841

Gregory, A., & Adams, R. (2024, February 1). Trans people in England more likely to have long-term poor mental health -study. The Guardian. https://www.theguardian.com/society/2024/feb/01/trans-people-england-more-likely-mental-health-condition-study 

Hidden Figures: LGBT Health Inequalities in the UK -LGBT Foundation. (2023, December 13). LGBT Foundation. https://lgbt.foundation/help/hidden-figures-lgbt-health-inequalities-in-the-uk/ 

Kartik, K. (2024). ‘The computer won’t do that’: Exploring the impact of clinical information systems in primary care on transgender and non-binary adults. https://www.adalovelaceinstitute.org/report/the-computer-wont-do-that/ 

North of England Care System Support (NECS). (2024, February 29). LGBTQ+ Health Inequalities. LGBTQ+ History Month. https://www.necsu.nhs.uk/lgbtq-history-month-lgbtq-health-inequalities/ 

Rigby, F. (2025, February 4). Trans People And The NHS: The Heat Of The Debate Needs The Light Of Evidence. The King’s Fund. https://www.kingsfund.org.uk/insight-and-analysis/blogs/trans-people-nhs-debate-evidence 

Watkinson, R. E., Linfield, A., Tielemans, J., Francetic, I., & Munford, L. (2024). Gender-related self-reported mental health inequalities in primary care in England: A cross-sectional analysis using the GP Patient Survey. The Lancet Public Health, 9(2), e100–e108. https://doi.org/10.1016/S2468-2667(23)00301-8