Can a patient change their sex/gender marker on their medical records?

According to the NHS England Primary Care Support website a person can request to have their sex/gender changed and a new NHS number to be issued “at any time”. They “do not need to have undergone any form of gender reassignment treatment in order to do so”.

Medical records, whether on paper or electronic, are more complicated than most people realise and much of the information is not centralised. Some basic demographic details are linked to the person’s NHS number, held electronically and can be accessed by any NHS service. GP records are now mostly electronic but held by individual practices (although some information from these can be accessed by local hospital trusts in the area). In addition, individual hospital trusts hold their own records; these are linked to a hospital number as well as the NHS number. Many of the hospital notes remain a mix of paper records and electronic. Information in those records is not accessible to services outside of that specific NHS Trust. Incompatibility between computer systems is a major problem.

On this background of a generally complex system for storing information about patients in the NHS, the issue of changing sex/gender markers on medical records is also complicated. Firstly, even though the item on the medical record may sometimes be called a ‘gender’ marker, healthcare practitioners usually understand the information as synonymous with a patient’s biological sex (female or male). Sex and gender mean different things (Bewley et al., 2021). In practice, when medical forms ask for a person’s ‘gender’ (and many still do) the relevant variable for clinicians is actually the patient’s sex. The NHS recognises the importance of distinguishing between sex and gender for patient care. Indeed NHS information architecture built in 2009 allows for the recording of both. However, the field for gender is often used as a proxy for sex and the field for biological sex is left blank (Forstater, 2021). Inaccurate data on sex leaves patients and staff at risk of errors. 

Adult patients are allowed to change the sex/gender marker on their own NHS medical records upon request (General Medical Council, 2016) but no standard advice or information about implications iw given. There is very little in the way of official guidance on if, when or how a child should be able to change details such as sex/gender marker and name on medical records. According to the NHS England Primary Care Support website (Primary Care Support England, no date) a person can request to have their sex/gender changed and a new NHS number to be issued “at any time”. They “do not need to have undergone any form of gender reassignment treatment in order to do so”. There is no stipulation that a patient needs to be over 18 in order to do this. There is no specific guidance around what to do in the case of children.

When a new NHS number is issued, a new medical record is created and information is transferred over from the previous record by the GP practice. However, the patient (or, presumably, their parent/carer in the case of children) could request that any reference to their previous identity be removed. The PCSE website stipulates: “Any information relating to the patient’s previous identity should not be included in the new record 

  • The patient’s previous name and any gender specific terms should be removed as should previous NHS number 
  • A black marker can be used to redact the record 
  • Electronic notes should be printed, redacted and re-scanned onto the new patient record.”

In addition to this process for GP records, a patient can ask for the sex/gender marker and their name to be changed on their NHS Trust hospital records without the need to go through the process detailed above. Again there appears to be no guidance referring to the situation with children being different to that of adults.

There are obvious implications for clinical management, managerial monitoring and research, especially if:

  • information in notes and computers does not align, 
  • different definitions and processes are in use by various healthcare teams, 
  • past medical information is deliberately erased, 
  • crucial details of someone’s previous medical history go missing in record transfers due to human factors such as clerical errors,
  • medical communication becomes redacted or unreliable so that information cannot effectively be shared between clinicians,
  • the patient is too ill (or indeed too young) to explain their situation. 

None of the potential risks to patient health of changing sex/gender markers in medical notes are presented in a standardised way, nor is written informed consent required to be obtained. This is a flaw that could lead to anticipatable patient harm or NHS litigation. Furthermore, children are unlikely to be able to understand differences between sex and gender, or why accurate words for biology are so important in healthcare, making it highly implausible that children could give valid consent to having their medical records changed.

A biologically inaccurate sex marker raises serious concerns for healthcare provision, particularly patient safety (Dahlen, 2020; Wheater, 2020). It might cause: failure of communication, inappropriate treatment, unintelligible or incorrect investigation results, delays to care and so on. These worries are especially important in a paediatric context. Altering children’s identities and medical records presents safeguarding risks. Adults have a duty to maintain the integrity of a child’s clinical information. 

The conflation of sex and gender within medical practice and clinical research is unacceptable, and carries negative consequences, maybe particularly for patients who identify as transgender. Such individuals could have both their sex and gender identity recorded in separate fields, as transgender researchers themselves have noted to be important for interpreting and analysing confidential health information. For instance, it is impossible to gain an adequate understanding of the cardiovascular risk factors for someone who identifies as nonbinary without also knowing that person’s sex (Scheim, 2021). Sex is a vital piece of data in routine clinical practice, from ensuring the patient is enrolled in appropriate cancer screening programmes, to checking their full blood count and renal function against the correct reference ranges (Gorvett, 2020).

In order to change ‘legal sex’ i.e. to have legal recognition of a change of gender (which is granted through the Government issuing an individual with a Gender Recognition Certificate) a person must be over 18 and meet specific criteria (UK Government, 2004). The amendment of medical records is not contingent on having a change in legal status.

References:

Bewley, S. et al. (2021) ‘Sex, gender, and medical data’, BMJ, p. n735. doi: 10.1136/bmj.n735.

Dahlen, S. (2020) ‘De-sexing the Medical Record? An Examination of Sex Versus Gender Identity in the General Medical Council’s Trans Healthcare Ethical Advice’, The New Bioethics, 26(1), pp. 38–52. doi: 10.1080/20502877.2020.1720429.

Forstater, M. (2021) ‘Rapid Response – Sex, gender and medical data: a way forward’. BMJ. Available at: https://www.bmj.com/content/372/bmj.n735/rr-0.

General Medical Council (2016) Trans healthcare. Available at: https://www.gmc-uk.org/ethical-guidance/ethical-hub/trans-healthcare.

Gorvett, Z. (2020) ‘Why transgender people are ignored by modern medicine’, BBC Future, 17 August. Available at: https://www.bbc.com/future/article/20200814-why-our-medical-systems-are-ignoring-transgender-people.

Primary Care Support England (no date) Adoption and gender re-assignment processes, PCSE NHS England. Available at: https://pcse.england.nhs.uk/help/patient-registrations/adoption-and-gender-re-assignment-processes/.

Scheim, A. (2021) Rapid Response – Re: Rethinking sex-assigned-at-birth questions, BMJ. Available at: https://www.bmj.com/content/373/bmj.n1261/rr.

UK Government (2004) ‘Gender Recognition Act’. Available at: https://www.legislation.gov.uk/ukpga/2004/7/contents.

Wheater, E. (2020) Recording sex on medical records: a case study of NHS Scotland, Murray Blackburn Mackenzie Policy Analysis. Available at: https://murrayblackburnmackenzie.org/2020/01/12/recording-sex-on-medical-records-a-case-study-of-nhs-scotland/.