Trans patients have missed out on screening due to the NHS’s failure to record biological sex on patient records, a new review has found.
The Sullivan Review, commissioned by the Government in February 2024 to look at good practice guidance on how to collect data on sex and gender identity, called on the NHS to ensure both biological sex and gender was recorded, otherwise it risks trans patients’ clinical care, screening access and safeguarding.
It said there had been a ‘gradual shift’ away from recording and analysing sex in NHS datasets and instead towards denoting gender identity, but that this had ‘clear clinical risks’.
It noted that trans patients had not been called in for screening for conditions that may affect them due to their sex and that this could have ‘have ‘potentially fatal consequences for trans people’.
In other cases, it could result in the misinterpretation of laboratory results, it added.
The review said: ‘The NHS should cease the practice of issuing new NHS numbers and changed ‘gender’ markers to individuals, as this means that data on sex is lost, thereby putting individuals at risk regarding clinical care, screening, and safeguarding, as well as making vital research following up individuals who have been through a gender transition across the life course impossible.
‘In the case of children, this practice poses a particularly serious safeguarding risk, and should be suspended as a matter of urgency.’
Professor Alice Sullivan, a professor of sociology at University College London who conducted the review, added on X that it should ‘not be seen as a zero-game between characteristics’.
‘We can and should collect data on both [sex and gender identity]. Acknowledging sex does not erase gender identity or vice versa.’
In a post on X, health secretary Wes Streeting said: ‘The Sullivan Review underlines the importance of recording biological sex – not just for research and insight, but also patient safety.
‘Doing so does not prevent us from recording, recognising and respecting people’s gender identity where these differ. We’ll act on findings.’
In response to the review, the director of inclusion at the LGBT Foundation, Alex Matheson, said: ‘LGBT Foundation welcomes the Sullivan review’s statement that data on trans identities is important, and we were pleased to see recognition of the importance of high-quality and accurate record keeping, as well as acknowledging that “people with diverse gender identities are being let down by data collection practices which conflate sex and gender identity, making it impossible to track the outcomes of distinct groups”.
‘The report acknowledges there is much to be learnt about how data insights can impact people, including the LGBTQ+ community. We also agree that the loss of clinical data for trans people can be harmful, however, we do have concerns about the framing of the review recommendations and how they can be sensitively implemented in ways that avoid creating further confusion and harm for trans and non-binary people.
‘LGBT Foundation will continue advocating for LGBTQ inclusive healthcare, sharing community insights with policy makers and health care providers to reduce harm and advance equality.’
Last year, Ms Matheson said there were ‘pockets of excellent care’ around ensuring that trans and non-binary people can access screening effectively, but there were also many patients experiencing inequitable care.
The review’s 10 recommendations
- In line with the UK Statistics Authority (UKSA) Inclusive Data Taskforce recommendations, data on ‘sex, age and ethnic group should be routinely collected and reported in all administrative data and in-service process data, including statistics collected within health and care settings and by police, courts and prisons’.
- Data on sex should be collected by default in all research and data collection commissioned by government and quasi-governmental organisations. By default, both sexes should be included in all research, including clinical trials, and sex should be considered as a factor in analysis and reporting. As a general rule (with some obvious exceptions), a 50/50 sex ratio is desirable in studies.
- The default target of any sex question should be sex (in other words, biological sex, natal sex, sex at birth). Questions which combine sex with gender identity, including gender identity as recognised by a Gender Recognition Certificate (GRC) have a mixed target. Sex as a biological category is constant across time and across jurisdictions, whereas the concept of ’legal sex’ subject to a GRC may be subject to change in the future and varies across jurisdictions. Using natal sex future-proofs data collection against any such change, ensuring consistency.
- The form of the question should follow the UK Censuses (England and Wales, Northern Ireland, Scotland) question and response categories. What is your sex? Response categories: Female, Male
- As sex and gender identity are distinct concepts, questions which combine sex and gender identity in one question should not be asked. We have observed a trend for questions which attempt to combine sex and gender diverse identities in one question. Such hybrid questions aim to solicit information on sex from the majority of respondents but on gender identity from some respondents. As such, the target of the question is muddled. Questions that mix sex and gender risk organisations being in breach of the PSED, as they do not identify either the protected characteristic of sex or the protected characteristic of gender reassignment.
- The word ‘gender’ should be avoided in question wording, as it has multiple distinct meanings, including: a synonym for sex, social structures and stereotypes associated with sex, gender identity. If a question targeting gender identity is worded as a question on gender, this is likely to mislead many respondents. Questions on sex have also often been labelled as ‘gender’. Change in the use of the term ‘gender’ means that it is important that questions on sex are labelled explicitly as such.
- The NHS should cease the practice of issuing new NHS numbers and changed ‘gender’ markers to individuals, as this means that data on sex is lost, thereby putting individuals at risk regarding clinical care, screening, and safeguarding, as well as making vital research following up individuals who have been through a gender transition across the life course impossible. In the case of children, this practice poses a particularly serious safeguarding risk, and should be suspended as a matter of urgency.
- Questions on sex and/or gender identity should not contain an additional category for people with DSD conditions, sometimes also known as ‘intersex’. People with DSD have a sex, they are not a third sex or sexless category, and to imply that they are is likely to cause offence. DSD is an umbrella term without a single agreed definition, and the question of which conditions are included is contested. Under conventional definitions, people with DSD are estimated to make up 0.018% of births, i.e. fewer than 2 in 10,000. Asking for DSD status is highly intrusive, poses a risk of identifiability, and is unwarranted given the lack of analytical use for data on such a small group. Asking for this information would need to be via a distinct question, not part of a question on sex or gender identity and is likely to be justified only in the context of specialist medical studies.
- Data providers often default to using ONS Census questions. However, the ONS 2021 Census question ‘Is the gender you identity with the same as your sex registered at birth’ has been shown to be flawed. The Office for Statistics Regulation (OSR) has stated that the statistics produced by this Census variable do not comply with important quality aspects of the Code of Practice for Statistics and has de-accredited these as official statistics . This question (and variants of it) should not be used.
- As organisations increasingly seek to collect data on gender identity, the problems identified with the ONS 2021 Census question have left a user need for a simple question which can be used in data collection with the general population. Organisations wishing to collect data on gender identity will need to be clear on the target of their question. We have identified 3 distinct possible targets for such a question: The protected characteristic of gender reassignment, Trans identification Identification as trans and/or gender diverse.
Source: DHSC
