- What is an Information Standard?
- What is a Fundamental Information Standard?
- What is the scope of this Information Standard for Sexual Orientation Monitoring?
- What question will be used to monitor sexual orientation?
- When will the standard come into effect?
- Is the Fundamental Information Standard for Sexual Orientation Monitoring mandatory?
- In the SOM specification it says: “in all services where it may be relevant to record this data”. What does this phrase mean?
- What are the expected benefits of this standard?
- Is there a cost associated with implementation?
- What are the information standard requirements?
- Will this information be recorded on an individual basis and be present on a person’s medical file or will it be recorded anonymously?
- The Standard refers to a person being asked “face-to-face” about their sexual orientation. However, some people may not feel comfortable with this and would rather information was captured anonymously by filling out an anonymous form.
- Why does the standard not include gender identity?
- Which services are currently collecting sexual orientation information?
- What support is there available to enable the implementation of the standard?
An information standard is defined in the Health and Social Care Act 2012 as: “a document containing standards that relate to the processing of information”.
Information standards are used across Health and Local Authorities with responsibilities for Adult Social Care to help collect and process information. The Data Coordination Board (DCB) assures the quality of information standards.
A fundamental information standard is one that can be applied across Health and Local Authorities with responsibilities for Adult Social Care that supports a general business need, for example recording sexual orientation. It will define at a high level what it is and how it should be implemented, used and or recorded.
A fundamental standard may cross organisational, geographical, professional and/or specialty boundaries. Fundamental standards are used within other Information Standards, Collections and Extractions that will define a specific implementation. For example, the categories of the Sexual Orientation Monitoring (SOM) Information Standard will be used on a number of NHS datasets such as the Improving Access to Psychological Therapies Data Set.
This standard provides the categories for recording sexual orientation but does not mandate collection. It provides the mechanism for recording the sexual orientation of all patients/service users aged 16 years and over across all health services and Local Authorities with responsibilities for Adult social care in England (although it might be used more widely by local authorities) in all service areas where it may be relevant to record this data. In settings and circumstances where this information is collected, it should be recorded in line with the standard.
The following question will be used to monitor sexual orientation:
Which of the following options best describes how you think of yourself?
- Heterosexual or Straight
- Gay or Lesbian
- Other sexual orientation not listed
- Person asked and does not know or is not sure
- Not stated (person asked but declined to provide a response)
- Not known (not recorded)”
The question set is based on research into monitoring sexual orientation conducted by ONS and the EHRC, and on current practice by organisations which monitor sexual orientation.
Classifications 1-3 are those which people are most likely to be familiar with, and are intended to simplify the question and answer. Classification 4 allows patients to identify as other than heterosexual/straight or lesbian, gay or bisexual (LGB). Classification U allows recording where a patient does not know or is not sure, consistent with terminology in NHS Digital’s Data Dictionary. Classification Z allows the patient not to disclose this information, as is their right. Classification 9 will not be visible to the patient or healthcare professional but is needed to account for missing data in analysis (e.g. where there is no record of sexual orientation).
The information standard was published on 5 October 2017. From this date, organisations are able to use this standard to implement sexual orientation monitoring.
The standard is published under section 250 of the Health and Social Act 2012. The Act says that those organisations designated by the standard must have regard to it and states that those organisations designated by the standard must have regard to it
Health and care organisations must review the impact of the SOM information standard and make appropriate changes to local Health IT Systems. Wherever sexual orientation monitoring occurs in an organisation, plans should be made to use the categories specified for these purposes in the standard by the conformance date- 31 March 2019.
This standard provides the categories for recording sexual orientation but does not mandate a particular data collection. Data must only be collected where there is a definite purpose/use for the data, which is a requirement under the Data Protection Act. In order to meet the requirements of the Public Sector Equality Duty, there is no need to collect data from every patient; representative sampling across services is acceptable.
Data may need to be recorded to collect evidence to meet the requirements of the Public Sector Equality Duty (a requirement of all public organisations), or for any research including the parameter of sexual orientation. It would be beneficial to consider sexual orientation monitoring for improving services for the LGB community- for example health professionals not making assumptions, sign-posting to appropriate services, and creating an environment of openness and inclusivity. See question 8 on the expected benefits of sexual orientation monitoring.
This standard will enable health and social care organisations to monitor sexual orientation in a way that is consistent with all other parts of the healthcare system.
The implementation of this standard will deliver benefits across a number of areas:
- care providers and commissioners are able to demonstrate that there is equitable access for LGB individuals;
- care providers and commissioners have an improved understanding of the impact of inequalities on health and care outcomes for LGB populations;
- policy makers, care providers and commissioners can better identify health risks at a population level. This will support targeted preventative and early intervention work to address health inequalities for LGB populations, thereby reducing expenditure linked to treatment costs further down the line.
Research shows that that LGB people experience greater health inequalities compared to heterosexual people, such as being at higher risk of poor mental health, or missing out on routine health screening. If a healthcare service collects information on patient sexual orientation, they will be able to target specific health promotion and services to LGB patients: for example, promoting cervical screening to lesbian and bisexual women; or referring young LGB people experiencing poor mental health to a specific LGB young people’s service.
A solution has been chosen that is simple and fits with the research conducted to make implementation as easy as possible. We consulted with the owners of the three datasets which already collect this data and with organisations in the health and social care system which routinely monitor sexual orientation. This found that they had taken a phased approach to implementation.
The Burden Advice and Assessment Service determined that this Standard does not require a burden assessment.
The information standard includes the following requirements for its implementation:
- IT systems: where this data is recorded, IT systems MUST be adapted to use the question and response codes as set out in this standard
- Health and social care organisations: where this data is recorded, health and social care organisations SHOULD provide adequate training for all staff involved in collection and recording of this data.
- Health and social care organisations: where this data is recorded, health and social care organisations MAY wish to create briefing documents for staff and patients/service users explaining why this collection is necessary.
- NHS Digital MUST be receptive to changes to data sets that may be impacted by this Fundamental Standard.
- NHS Digital MAY wish to consider publishing data where it exists.
Public authorities have legal duties to meet under the Equality Act 2010. This is called the Public Sector Equality Duty which requires organisations to gather information about the people who use services to ensure everyone has equal access to these services so their needs can be met e.g. older people; people from BME communities and people from the Lesbian, Gay, Bisexual and Transgender communities. These are called “protected characteristics, of which there are nine. If an organisation wishes to fulfil this duty then they can survey patients anonymously. Some organisations have free-standing terminals where inputting can be done for various things e.g. registration, Friends and Family Test responses, as well as inputting demographic data such as age, ethnicity, gender or sexual orientation. In these cases there is no need to record the demographic information.
However, if a clinician is seeing a patient and the sexuality of the patient may have a bearing on the clinical assessment and treatment then it could be recorded in the notes, and potentially therefore on the patient’s demographic record. As an example, every sexual health clinic should record the sexuality of their patients to understand life-style risks, and will have this in notes and on electronic records. However, in contrast, a patient presenting to a clinician with a broken wrist would not have this information recorded as it has no purpose in relation to their treatment.
This information standard does not pre-determine the place, anonymity nor recording mechanism of the information. That is for the individual organisation to determine according to the purpose for collecting this information. The Standard is not mandatory and simply sets out the way the question should be asked to achieve greater consistency across the NHS over time. Essentially, it is saying to organisations: “if you need to record this, then this is how you do it”.
The Standard refers to a person being asked “face-to-face” about their sexual orientation. However, some people may not feel comfortable with this and would rather information was captured anonymously by filling out an anonymous form.
See answer to question 11 above.
Questions about a patient’s sexual orientation will be asked at the same time as other routinely asked demographic questions such as age or ethnicity, usually on forms that patients already fill out themselves, such as when registering with a GP surgery. Many organisations and GP practices already include a question on sexual orientation. Moving forward, the only change is that when the question is asked it must now be asked in the same format as set out in the Information Standard.
It is important to note that it is always a patient or service users choice as to whether or not they decide to disclose this information if asked.
We understand the importance of monitoring trans/non binary status and gender identity as there is a significant lack of evidence about the needs and experiences of trans and non-binary people. As part of developing the information standard, we engaged with the trans community and it was evident that gender identity and Trans status should be kept separate from sexual orientation.
NHS England is working with the Department of Health and other partners on a scoping exercise which is evaluating options for the development of a unified information standard which includes gender identity. The initial scoping exercise is due to be completed by spring 2018 when an options paper will be considered by NHS England and the Department of Health. This standard for SOM acts as the pilot for any future unified standard and the intention is that the SOM will become part of any unified information standard.
The following five NHS services collect sexual orientation monitoring:
- Improving Access to Psychological Therapies Data Set – Version 1.5 – ISB 1520
- Genitourinary Medicine Clinic Activity Data set (GUMCADv2) Standard Specification – ISB 0139
- Deprivation of Liberty Safeguards (DoLS), under the Mental Capacity Act 2005, Data Collection. DCB 2080
- Mental Health Services Data Set version 3- DCB 0011
- Cancer Outcomes and Services Data set (COSD)- version 8- DCB 1521
In terms of the COSD, it should be noted that either version 7.0 or version 8.0 can be used for diagnoses between 1 April 2018 and 30 June 2018 . Version 8.0 only must be used for all submissions from 1 July 2018 diagnoses onwards. Any exceptions to this must be agreed with the National Cancer registration and Analysis Service (NCRAS)
It should be noted that the Office for National Statistics (ONS) is looking into the inclusion of a Sexual Orientation Monitoring question on the 2021 census.
To support the implementation of the Standard, LGBT Foundation has developed a “Good practice guide to monitoring sexual orientation” aimed for NHS Organisations and other providers and highlighting the benefits of sexual orientation monitoring.
Health Education England has produced an e-module on the benefits of sexual orientation monitoring for all NHS staff.
NHS Employers is currently supporting 25 organisations to pilot the implementation of the information standard.
LGBT Foundation has also developed frequently asked questions on Sexual Orientation Monitoring for service users.
In addition, Stonewall has produced a resource called “What has it got to do with you” providing ten reasons on why people should complete sexual orientation monitoring forms.
Any queries about the standard can be forwarded to the NHS Equality and Health Inequalities Unit- email firstname.lastname@example.org.