Guidance on collecting and submitting data for the data items on gender within the Mental Health Services Data Set (MHSDS) v5.0

By collecting this data, services can provide more personalised care to patients, as well as better understand trans and non-binary people's experiences , outcomes and inequalities at a local system level.  

Trans and non-binary people may have specific healthcare needs that relate to their trans status and gender identity. Trans and non-binary people are more likely to experience health inequalities and poorer mental health outcomes than the wider population. For example, Stonewall (2018) reports that two thirds of trans people (67%) and seven in ten non-binary people (70%) have experienced depression in the last year, and 12% of trans people made an attempt to take their own life in the year prior to the survey. The National Institute of Economic and Social Research review of evidence on inequalities faced by LGBT people (2016) finds that for trans men and trans women, long waiting times for referral to Gender Identity Clinics are seen to adversely affect mental health. 

The Government’s LGBT research report 2018 also reports that 40% of trans respondents who had accessed or tried to access public healthcare services had experienced at least one of a range of negative experiences because of their gender identity in the 12 months preceding the survey, such as their specific needs being ignored or not taken into account, or avoiding treatment altogether for fear of a negative reaction. The report also found that trans respondents (36%) were much more likely than cisgender respondents (21%) to have accessed mental health services, and to have tried to access mental health services without success. 

By collecting this data, services can provide more personalised care to patients, as well as better understand trans and non-binary people’s experiences, outcomes and inequalities at a local system level. 

We have provided guidance on the three data items provided and the code list for these data items is available from the annex. 

New gender identity code

The NHS data dictionary definition of this item is: The gender identity of a person as stated by the person. 

This new data items should therefore capture how patients tell providers they would like their gender to be recorded and referred to by the service. 

This data item should be completed using information provided by the patient as part of registrations and/or care contacts. It should not be completed by linkage to the NHS spine or assumed/inferred by the service. 

This means it may not match the gender recorded by other NHS services. The gender identity selected by a patient within a service should never be overwritten by information provided directly from other services or via the NHS Spine. 

This new gender identity data item is now the priority for providers to collect, largely replacing the previous item used. 

New: Gender identity same as birth indicator

The NHS data dictionary definition of this item is: An indication of whether the person's gender identity is the same as their gender assigned at birth.

This data item should be completed using information provided by the patient as part of registrations and/or care contacts. It should not be completed by linkage to the NHS spine or assumed/inferred by the service.

No change: Person stated gender code

The NHS data dictionary definition of this item is: The gender of a person. Person Stated Gender Code is self declared or inferred by observation for those unable to declare their person stated gender.  

This item was intended to be collected from the patient as part of patient registrations on provider systems. In some instances it is being completed through linkage with the NHS Spine but this should never overwrite the gender a patient identified as to the provider.

From 1 October 2021, when v5.0 of the MHSDS was implemented, this data item is now a low priority as it does not reflect best practice in recording gender identity. It has been retained as it matches the gender data item in the NHS spine and so retaining it avoids any potential issues with data linkage and matching. It also aligns with the gender data item included in the Professional Record Standards Body’s Core Information Standard v2.0, which defines a set of information that can potentially be shared between systems in different sites and settings, among professionals and people using service.

Providers are not required to collect data to complete this data item in the MHSDS from patients. If a local need to ask patients for this information is identified then it should be made clear that what is being requested is the gender identity that may be held for the patient on other NHS systems not their current gender identify to avoid duplication of information collection.

If a provider’s record system requires that the data is completed and or linked to the NHS Spine this will not impact on data quality assessments for the provider but there is no requirement to have that linkage in place for the purpose of providing data to the MHSDS.

The inclusion of this data item will be reviewed in future versions of the MHSDS.

There will be a short review of the data quality and completeness of the new and existing data items after the first data submissions are made data is early 2021. Once that is completed in any analyses undertaken and published on gender, the default position will be that information collected via the GENDER IDENTITY CODE will be the primary source of gender data.

Where there is no data recoded against the new data item, then any information recorded in the PERSON STATED GENDER CODE data item will be used as a secondary source.

Data from both items will be used in this way to avoid a reduction in data completeness on gender following the introduction of the new data item.

Analysis of responses to the two-stage question enables data collection on both the protected characteristics of sex and gender reassignment. We want to collect data we currently do not have on trans and non-binary individuals, whilst not impacting our ability to continue to collect gender data. Based on the evidence we have collected and on the testing we conducted, we believe the best way we can achieve this is to ask a question covering gender identity, followed by one on gender reassignment, both of which are voluntary.

Sex at birth data can be understood from the combination of the two questions answered. For example, a response of male to the first question, and ‘yes’ to the question asking if their gender identity is the same as sex registered at birth, would lead to the recording of the sex ‘male’. This will help NHS England and NHS Improvement to understand any differences of experience for trans and non-binary people, as well as being able to analyse results for cisgender people and transgender people separately as needed.

Trans status, also sometimes referred to as trans history refers to people that have undergone or are undergoing gender reassignment. The Equality Act states that a person has the protected characteristic of gender reassignment if they are proposing to undergo, are undergoing or have undergone a process for the purpose of reassigning the person's sex by changing physiological or other attributes of sex.

To be protected from gender reassignment discrimination, an individual does not need to have undergone any specific treatment or surgery to change from their sex assigned at birth. This is because changing physiological or other gender attributes is a personal process rather than a medical one. A person can be at any stage in the transition process – from proposing to reassign their gender, to undergoing a process to reassign their gender, or having completed it.

Section 22(1) of the act creates an offence of disclosing protected information where that information has been obtained in an official capacity. The offence can be committed by a corporate body or by an individual. It is important to note that the offence relates to disclosure of protected information and not its collection. There is no offence of being in possession of protected information. Protected information arises only in respect of an individual who has made an application for a ‘Gender Recognition Certificate’ (GRC) and it concerns that application or, if the application is granted, the person's gender prior to the grant of the GRC. The offence is therefore narrowly defined. The offending disclosure must relate to the process of obtaining a GRC or to prior gender following the grant of a GRC. The offence does not cover the disclosure of information about expressions of gender identity generally. 

The additional two-stage gender and trans status questions will make no reference to whether or not a GRC has been granted or applied for under the 2004 Act. The processing and disclosure of data about gender identity for the purposes of health inequalities analysis does not create a Section 22 difficulty as long as the information disclosed contains nothing pointing to an application for, or an existing, GRC.

The original male/female code will be retained on the patient’s medical record, as this links to PDS and will not be overridden. The new two-stage question is being introduced into MHSDS as an additional code (see Appendix 1). The ‘Gender Identity Code’ and ‘Gender Identity Same At Birth Indicator’ has been included within the GUMCAD and HARS datasets for several years with no issues. However, it is important to note that the original ‘Person Stated Gender Code’ on PDS does not necessarily record a person’s sex at birth. For example, a trans person may choose to have their sex assigned at birth or their lived gender recorded on PDS under the current ‘Person Stated Gender Code’. As described above, the additional questions should be able to provide better data on sex assigned at birth if it is required.

NHS England and NHS Improvement’s LGBT Health Team has produced the attached guidance in relation to sexual orientation, gender and trans status monitoring in practice, together with the LGBT Foundation – called ‘If You Don’t Count Us, We Don’t Count’: LGBT Foundation - Monitoring Sexual Orientation and Trans Status. 

New data items

Existing data item