Recording sex on medical records: a case study of NHS Scotland

  1. Background

Sex is an objective, verifiable, fundamental and immutable characteristic of the human body. Belonging to either the male or the female sex category has profound impacts on the medical needs of a person. This includes needs pertaining to the reproductive system, monitoring for disease that affects the reproductive anatomy, contraception and fertility treatment. It also encompasses blood donation and transfusions, interpretation of diagnostic tests, medication dosages and the identification and treatment of diseases whose symptoms manifest themselves differently in men and women.

Some people undertake surgical and/or hormonal interventions as part of the process of transitioning gender. While also relevant to medical needs, these do not have the effect of negating all sex effects and the extent of such interventions moreover varies considerably across the relevant population. There is no reliable data available, but available studies suggest only a small minority of those who express a transgender identity undergo full surgery (often referred to as ‘sex reassignment surgery’), whether due to difficulty of access, medical considerations or choice, while a larger proportion will undergo some form of physical intervention, such as facial feminisation, mastectomies and/or cross-sex hormones. In 2018, NHS Scotland estimated that only around half of the transgender population might be interested in medical interventions of any sort.

It is therefore vital that biological sex is accurately recorded on medical records, alongside information about gender reassignment status and any medical interventions related to that. On an individual basis, these records are used by those providing medical care to inform the best possible clinical decision making. Electronic health records are also vital tools in public health research. These datasets enable the auditing of disease prevalence among populations, and evidence policy decisions such as resource allocation, identifying research priorities, and targeting public health messages.

Following the introduction of the Gender Recognition Act 2004, it became possible for patients who had not undergone sex reassignment surgery to obtain a new health record showing the opposite sex, as a replacement for their previous record. This had previously been the practice only for those who had undergone sex reassignment surgery. Since 2004 it has therefore been possible to record a patient’s self-declared gender identity in place of sex, rather than as an additional piece of information, regardless of how much or how little physical intervention a person has had. It is not clear whether a Gender Recognition Certificate (GRC) was a requirement to begin with, but in 2016 the General Medical Council (GMC) published guidance that explicitly stated that no GRC was necessary.

  1. What’s recorded?

In Scotland the Community Health Index (CHI) is a population health register used for administering the functions of primary care departments (such as General Practitioner services), ensuring that individuals are invited to screening and immunisation programmes, and as an epidemiological tool for public health research.

All patients in NHS Scotland are assigned a CHI number, which is 10 digits long, where the 9th digit encodes biological sex: an even number designates female, an odd number designates male. While GMC guidance on the requirement for a GRC was only published in 2016, it is clear from an FoI response issued in 2014 that in Scotland any need for a GRC prior to changing CHI number had been dropped by that year. The following, from a form that was found in an Edinburgh GP surgery, confirms that no GRC or physical transition are necessary:

“…you are allowed to change your name and gender in your UK medical records without having gone through the legal procedure of applying for a Gender Recognition Certificate.”

“…it is not necessary for you to transition physically, as long as you identify as the gender that you wish to change to.”

“Changing your gender in the system would mean that your CHI number will be changed to reflect your gender.”

The perceived advantages of this are described by Louise MacLennan, Head of Equality and Engagement, NHS National Services Scotland, in evidence to a parliamentary committee in December 2018:

“Allowing trans people to record their sex in accordance with their lived identity on medical records and diversity monitoring forms in health rather than their biological or GRC sex enables better healthcare planning and improved patient experience.”

  1. Implications for providing care

We need to scrutinise the claim that withholding relevant information about a patient’s body is conducive to ‘improved patient experience’ or ‘better healthcare planning’.

One setting in which this is illustrated is screening programmes. In response to the need to have people enrolled on the correct screening programmes, the 2014 FoI response stated:

“Whilst there is an enhancement to CHI which has been developed to allow for patients’ CHI records to be marked to be included for screening if their gender does not match the gender usually associated with that particular programme e.g. a trans-male who had previously had cervical screening in their former gender, the CHI record in the future will be able to record that the patient should be included in the screening programmes – the enhancement is not yet ready to be implemented.” [my emphasis]

Five years later, the situation remains half-baked. For abdominal aortic aneurysm screening, trans-women who have changed the sex marker on their CHI are invited only if they did so after 14 June 2015. If they changed their recorded sex  prior to this they are  advised to self-refer to be sure of gaining access. The mirror image applies for trans-men and breast screening. However, for cervical screening trans-men are not invited if they changed their CHI after this date. What happens if their CHI was changed before 14 June 2015 is not stated.  In England, there is no evidence of anything like the post-June 2015 IT enhancements being in place. Instead, it appears to be left to transgender patients to request screening themselves.

The process of ‘changing CHI number’ also has implications for providing care. The CHI number isn’t just changed. Instead an entirely new medical record is created, with a CHI number which now reflects the opposite sex, and the old record and the new record are linked. However, a patient may refuse to link the new and old records. These logistics may seem bureaucratic, but they are important. If the records are not linked this may negatively impact on the continuity of care a patient receives. Sharing medical records between NHS services and clinicians enables the better understanding of a patient’s history, and informs their clinical judgment. This goes beyond just the recording of sex and transgender status. If a patient has another condition, there is a risk that this too would be lost from the medical record and this loss of information could seriously endanger that patient’s health and safety. We are long past the time when people had the same GP for decades. Systems are needed more than ever to provide continuity of care for individuals.  The community whose health will be most compromised by gaps like this is the transgender community.

The machinations around screening reveal an acknowledgment that sex is still a relevant biological factor to someone’s health, regardless of whether they are transgender or not, and that therefore it must be recorded somewhere, and in some way. So, what, exactly, is achieved by changing the sex encoded by the CHI number, when sex must be recorded anyway, just somewhere else? The fact that these systems are nascent, complex, and unimplemented, all increase the risk of error in the data record; and therefore the likelihood of error in clinical decision-making. How this achieves the aims of ‘better healthcare planning’ and ‘improved patient experience’ remains unclear.

  1. An informed choice?

Some may argue that this is just a matter of personal choice; if a transgender person wants to change their sex on their medical records even with these associated risks then that is their choice. But do they understand the risks? According to Louise MacLennan’s submission on the Census (Amendment) (Scotland) Bill:

“When a patient asks Practitioner Services to change their gender we alert them to the current clinical risks if they are undergoing a gender specific screening programme or follow-up treatment as a result of this we also advise the patient to discuss the clinical risks with their GP practice.”

However, the Edinburgh GP practice quoted above provides no information on clinical risks, no mention of any complications regarding screening programmes, and no mention of further consultation with the GP to discuss the change. Despite the intention to inform, laid out above, it is not clear how far patients are actually being reliably informed by GPs of the risks entailed by changing their CHI record.

  1. An individual choice?

The use of medical records as a public resource, particularly for epidemiological purposes, means that the extent to which the individual has the right to ‘choose’ this course of action is also debatable. If ‘sex’ is changed on the medical record, but these changes are not tracked, it obscures the distinction between the male-to-trans-woman and the female-to-trans-man populations, and therefore determining what their distinct medical needs are becomes more difficult.

LGBT lobby groups often argue that the numbers involved are so small that it probably won’t make a difference. They may be very small, they may be vanishingly small, or they may be more than we expect. We don’t know, and actually, we should know before we dismiss them as inconsequential. It is also a mistake to think that just because the number is small, that it is therefore unimportant. When neither sex nor transgender status are accurately recorded, epidemiological research using public health data to monitor the health of the transgender population specifically is hampered, and similarly planning service provision for them is hampered. It is the transgender community who will suffer as a result of this.

  1. Being transgender as important information in itself

For people with a history of gender dysphoria, hormone treatment or sex reassignment surgeries (such as mastectomy, phalloplasty, vaginoplasty or orchiectomy), these diagnoses and treatments are important variables that must be recorded in their health records to ensure appropriate treatment, follow up and monitoring for any related adverse events. Feelings and experiences are also important in medicine; but this does not mean that they supersede other factors, such as sex, or, worse, that they should be sublimated into an already existing variable such that neither are accurately recorded. That this has been overlooked is clear from the following response to a Freedom of Information request from NHS Scotland:

“It was important in this change that patients were not ‘flagged’ as transgender on CHI as this could cause discrimination.”

If the sex marker in a health record has been changed, this is relevant clinical information. Various treatments may also be relevant in different contexts. These  things should therefore be evident on a person’s CHI. The extent to which medical professionals – who make decisions about patient care based on information provided by the CHI – are aware of the policy not to disclose them is unclear. Imagine a doctor interprets the results of a blood test from a female patient under the misapprehension that the patient is biologically male (due to false data on the medical record), and on the basis of this interpretation makes a clinical judgment that ends up harming the patient. Then imagine that this doctor is told that the patient wasn’t flagged as transgender because “this would cause discrimination”. Is this imposition of ignorance, on those who have trained for years to provide the best possible care to their patients, fair?

  1. Knowing what matters

This comes down to something very simple. When the internal sense of one’s gender can be presented as though it is sex, this deviates from the collective understanding of what is meant by ‘sex’ among medics and clinical researchers. It compromises the integrity of a verifiable, objective variable that describes a fundamental aspect of a person’s body, and conflates it with a self-reported, subjective variable that describes something very different.

We all rely on a collective understanding of what ‘sex’ means if we are to use it to make evidence-based decisions about health. Deviating from the collective understanding is misleading and will ultimately endanger patients. The current situation is more dangerous than a simple omission of sex. In that instance, there would be a ‘red flag’ raised in the mind of whoever is using this data, namely that information was missing. Instead what they are seeing is false information. This false data is dangerous because it is insidious. The absence of data where you expect to see it is, at least, obvious. But the presence of false but plausible data is not, and so goes unquestioned.

Gender identity may still be important, at minimum because it gives information about how patients want to be interacted with face to face. Health professionals will want to have this information as part of providing patient-centred care. But it should be recorded in addition to sex, and not instead of it. That NHS Scotland has sacrificed sex to gender identity indicates that this policy has not been adopted for scientific or medical reasons. Priority has been given to concealing their biological sex from those in the system who have no reason to know it, over disclosing it to those who may have compelling reasons to know it, as providers of individual care or population-level researchers. This raises the question, why has an  organisation that is dedicated to providing and improving patient healthcare and health research, introduced a policy that is so at odds with its mission?

This article was first published with the author anonymised. We are now pleased to be able to say that it was written by Emily Wheater, a PhD researcher in Neuroscience at the University of Edinburgh.

December 2019

References:

Haemotology News (2017) Measures needed to identify past pregnancy in transgender male blood donors https://www.mdedge.com/hematology-oncology/article/150262/transfusion-medicine/measures-needed-identify-past-pregnancy [accessed 7 December 2019]

Whitley, C and Greene, D (2017) Clinical Chemistry 63 (11) 16800-1683 ‘Transgender Man Being Evaluated for a Kidney Transplant http://clinchem.aaccjnls.org/content/63/11/1680

ITV News (2018) 8,000 UK women die due to unequal heart attack care, 22 November 2018 https://www.itv.com/news/2018-11-22/8-000-uk-women-die-due-to-unequal-heart-attack-care/ [accessed 7 December 2018]

General Medical Council (2016) Trans healthcare: confidentiality and equality
https://www.gmc-uk.org/ethical-guidance/ethical-hub/trans-healthcare#confidentiality-and-equality [accessed 7 December 2019]

NHS National Services Division Scotland (2019) Community Health Index (CHI) Number https://www.ndc.scot.nhs.uk/Data-Dictionary/SMR-Datasets/SMR-Validation-Section/Patient-Identification-Section/Community-Health-Index-Number.asp [accessed 7 December 2019]

NHS National Services Division Scotland (2019) Freedom of Information request NHS CHI FOI

MacLennan, L. (2018) Culture, Tourism, Europe and External Affairs Committee: Census (Amendment) Scotland Bill, submission From Louise MacLennan https://www.parliament.scot/S5_European/General%20Documents/CTEEA_CensusBill_MacLennanLouise_CTEEA_S5_18_CB_37.pdf [accessed 12 December 2019]

NHS Inform (online) Screening information for the transgender community.   https://www.nhsinform.scot/healthy-living/screening/screening-information-for-the-transgender-community#overview [accessed 7 December 2019]

UK Government (online) New PHE Screening leaflet for trans and non-binary people has improved awareness. https://phescreening.blog.gov.uk/2018/01/24/new-phe-screening-leaflet-for-trans-and-non-binary-people-has-improved-awareness/ [accessed 7 December 2019]

Edinburgh GP surgery leaflet:

GP surgery CHI leaflet

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