Sexual Orientation Monitoring - Statement of Need
18 March 2015 Version 6, HSCIC Ref SCCI2094
Idea submitter name, organisation and email
Heather Williams, The Lesbian & Gay Foundation, [email protected]
Type of Proposal
Is person identifiable data involved?
Standard
Yes / No
Plain English description of proposal
A standard for the mandatory recording of the sexual orientation of patients / service users aged 16
years and over across the whole of health and social care in England.
This is to allow reporting and comparative analysis with other data, such as risk factors.
The targeted implementation date requested by the submitter is April 2016, although it is recognised
that this is very ambitious.
Useful Background
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Sexual Orientation is one of the nine “Protected Characteristics” defined by the Equality Act (2010)1.
In this there is a legal obligation for all public sector bodies are required to ensure (and be able to
demonstrate) that people are not discriminated against based upon these characteristics
The lower age limit is based on research published by the Equality & Human Rights Commission
into the feasibility of Sexual Orientation Monitoring (SOM).2 This research shows that until the age
of 16, sexual orientation is unlikely to be clear or fixed.
Currently sexual orientation is only recorded and reported in 2 clinical data sets:
 Genitourinary Medicine Clinic Activity Data Set (GUMCAD)3
 Improving Access to Psychological Therapies (IAPT) Data Set4
This data is also collected from Social Care by HSCIC in the annual Deprivation of Liberty
Safeguards return from local authorities (Mental Capacity Act 2005)5
Under this proposal, the requirement for recording this data will be mandatory for all health and
social care professionals, in every service commissioned by health and social care (including those
delivered in the community and by the voluntary and community sectors). This will happen at every
face to face contact with the patient, where no record of this data already exists.
The patient will retain the right not to disclose this information, but this response will become part of
the record (similar to that which is done with recording Ethnicity).
The scope for Sexual Orientation Monitoring (SOM) in this proposal is England.
The scope does not include monitoring of gender or gender identity. It is recognised that these
characteristics are related and there is potential for relevant agencies to create or amend their
processes, recording and monitoring this data at the same time at which Sexual Orientation is
recorded
It is understood that NHS England is considering an Information Standard to cover monitoring of all
the protected characteristics6 and that:
a) gender identity will be properly covered by that standard and
b) This data standard for SOM becomes part of it, in order to facilitate an integrated Information
Standard.
In addition it is still unclear how (or if) data using this information will be published.
1
http://www.legislation.gov.uk/ukpga/2010/15/contents
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Sponsor
name, role,
organisation,
email and tel
Senior
Responsible
Officer (SRO)
name, role,
organisation,
email and tel
Jon Rouse, Director General, Social Care, Local Government and Care,
Department of Health
[email protected]
020 7210 5207 (Laura Sorrel, Business Manager to Jon Rouse)
John Holden, Director of Systems Policy, NHS England
[email protected]
0113 8251466 (Joanne Barr, PA to John Holden)
Funding Status
Development costs for the standard are covered by NHS England.
Due to the scope of this standard, implementation costs are not available at this stage. Full costs will
be assessed at the next stage. The costing exercise will include consultation with partners in the
health and social care system, including NHS England’s Data Monitoring Sub-Group.
It is anticipated that maintenance costs for this standard will be low. Again, this will be explored in
further detail in the next stage.
Key Aims and Benefits
2
McDermott, E. Researching and monitoring adolescence and sexual orientation: Asking the right questions, at the
right time. Equality & Human Rights Commission, 2010.
http://www.equalityhumanrights.com/sites/default/files/documents/research/researching_and_monitoring_adolescence
_and_sexual_orientation_final_version_19-01-11.pdf
3
http://www.datadictionary.nhs.uk/data_dictionary/messages/clinical_data_sets/data_sets/genitourinary_medicine_clin
ic_activity_data_set_fr.asp?shownav=0
4
http://www.datadictionary.nhs.uk/data_dictionary/messages/clinical_data_sets/data_sets/improving_access_to_psych
ological_therapies_data_set_fr.asp?shownav=0
5
http://www.hscic.gov.uk/dols
6
Although at the time of writing this document, it has not been possible to confirm one way or another
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Apart from the legal obligation to record this information, the proposed standard will aid all health
and social care organisations to demonstrate the provision of equitable access for lesbian, gay and
bisexual (LGB) individuals and contribute to the improvement of care providers’ understanding of the
impact of inequalities on health and care outcomes for different populations in England.
There is a strong evidence base that LGB people are disproportionately affected by a range of
health inequalities, including poor mental health, higher risk of self-harm and suicide, increased
prevalence of Sexually Transmitted Infections (STI) including HIV, increased use of alcohol, drugs
and tobacco with a higher likelihood of dependency; increased social isolation and vulnerability in
old age.7 However, a lack of patient SOM means that these inequalities and related specific patient
needs are often not acknowledged or addressed in mainstream service provision.
Mandatory SOM across health and social care would allow policy makers, service commissioners
and providers to better identify health risks at a population level. This would support targeted
preventative and early intervention work to address health inequalities, which is shown to reduce
expenditure linked to treatment costs further down the line.8
Data collected at a national level would also address the current major gaps in existing data relating
to patient experience and outcomes. The GP Patient Experience Survey records respondent sexual
orientation and a recently published study analysing that data found that sexual minorities suffer
both poorer health and worse healthcare experiences.9
Options
7
Williams, H. et al. The LGB&T Public Health Outcomes Framework Companion Document. National LGB&T
Partnership 2014. www.lgf.org.uk/phof
8
Cox, J. and Morris, D. Greater Manchester Building Heath Partnerships Summary Report. New Economy and The
Lesbian & Gay Foundation. 2014. www.lgf.org.uk/bhp
9
Elliot, M. et al. ‘Sexual minorities in England have poorer health and worse health care experiences: a national
survey.’ Journal of General Internal Medicine. 2015 30(1):9-16. http://www.ncbi.nlm.nih.gov/pubmed/25190140
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Option 1 - Do nothing
This would maintain the status quo where it is impossible to identify the sexual orientation of a
person and thus provide the information to enable timely intervention, support and treatment.
Option 2 – Develop and publish the standard as proposed.
This would mandate the recording (or confirmation) of an individual’s sexual orientation (or at least
the individual’s response to being asked) by all health and social care professionals in all care
settings whenever a face-to-face contact is made. Where this data is to be recorded and how it will
“flow” is yet to be decided, but it could be passed to, and added to the data held on the Personal
Demographics System (PDS)10. This would mean that there is no need to change existing clinical
data sets as sexual orientation could be linked through common data, i.e., the individual’s NHS
Number. It would also support health and social care to be more compliant with the Equality Act and
corresponding Public Sector Equality Duty than they are currently.
Recommendation
Option 2 – Acceptance of this proposal would mandate that the question about an individual’s
Sexual Orientation be asked and the response recorded.
Impact Assessment and Prioritisation Panel Outcomes FOR SCCI USE ONLY
Priority
Categorisation
Recommended
Future Stages
Single Stage = Full (all evidence)
Two Stage = Requirement followed by Full
Multiple Stage = Requirement followed by Draft followed by Full
- Where Draft includes EC98/34 European Consultation
Other Relationships / Dependencies
There is an impact of other standards which collect data on sexual orientation. These are:  the Genitourinary Medicine Clinic Activity Data Set (GUMCAD)11
 Improving Access to Psychological Therapies (IAPT) Data Set12.
Consequently there will be a requirement to change the NHS Data Dictionary – see DETAILED
BACKGROUND(below)
10
http://systems.hscic.gov.uk/demographics/pds/contents
11
http://www.datadictionary.nhs.uk/data_dictionary/messages/clinical_data_sets/data_sets/genitourinary_medicine_cli
nic_activity_data_set_fr.asp?shownav=0
12
http://www.datadictionary.nhs.uk/data_dictionary/messages/clinical_data_sets/data_sets/improving_access_to_psyc
hological_therapies_data_set_fr.asp?shownav=0
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Contact has been made with the Implementation Managers for both datasets to discuss the
proposed wording for a SOM standard and to compare it against their needs. At this stage, the
proposal is supported in principle by the GUMCAD Implementation Manager.
The Information Commissioner’s Office will also be consulted as to implementation plans.
Known Issues or Risks
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At the time of writing this proposal, it is unclear what the burden on the service may be. This cannot
be estimated until the requirements have been defined – in the worst case it may be £10M’s. So as
part of the requirements gathering process it is essential that assurances are given by the proposal’s
sponsor that:
1. The funding for development and implementation is in place
2. That the costs associated with this proposal demonstrate value for money to the Health and
Social Care budget
Assuming those assurances are forthcoming, and then continue with development of the proposal.
The two main potential risks for the proposed standard are costs of implementation and
maintenance (although the submitter expects the maintenance costs to be low) and the cost of staff
training across all health and social care services to implement SOM.
Due to the scope of this standard, an estimate of implementation costs is not yet available.
Costs will be assessed in the next stage of the process in order to establish the full extent of costs
for the health and social care system in implementing the proposed standard as part of the wider
consultation process.
A risk to the timely implementation of the standard is that it may be referred for European
Consideration if it were felt that the implications of the standard extend beyond the United Kingdom.
Subject Matter Experts consulted during the drafting of this proposal have identified the following
risks and issues:
 The current data item within the NHS Data Dictionary, which is used in GUMCAD and IAPT
data sets, will need to be retained; and a new data item to fulfil this I2N created. This is
because the proposed codes ‘reuse’ value 4 to mean something else, and also because
these data sets would be unlikely to be changed just to implement this new standard; it will be
necessary to move the data sets at their next formal Change. Mapping between the old and
new code sets should be provided.
 Is this standard intended to cover the recording of information for the NHS and social care
workforce as well as patients?
 Social Care will need to align with these suggested values for the Deprivation of Liberty
Safeguards return
 The owners of the GUMCAD and IAPT data sets must agree to the proposed changes to the
code set
 Consideration should be given to including this data item in PDS, which may be visible to a
wide range of staff in many settings. Role-Based Access Control will need to be considered
as many patients would consider this item to be sensitive.
 Is there an impact on national systems such as Choose And Book (electronic referrals) which
pass demographics data?
 Sexual orientation codes are published by the UK Terminology Centre within the various
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terminologies. These codes, which are included within the Sensitive Data pack and are
released via TRUD. This then and allows organisations to choose which data should be
anonymised for flow to e.g. Secondary Uses Service. The inclusions within this pack were
defined by clinicians and do not necessarily relate to legal restrictions on flow (which appear
to only relate to IVF treatment currently). This apparent mis-match of codes MUST be
addressed urgently or there could be the unintended consequence that all records get
anonymised because of the inclusion of this data item. Note that this issue will also affect GP
Extraction Service, which uses a slightly different set of codes; and may also affect Summary
Care Record (further investigation needed here).
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Appendix
Requirements for the future
It is recognised that there is potential for relevant agencies in the other home countries to create a
similar standard following successful completion of this proposal. Contact will be made with
colleagues in the other home countries in due course, to share our approach in order to ensure
consistency across Great Britain.
Detailed Background
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Under the Equality Act 2010 and the corresponding public sector Equality Duty (section 149 of the
Act13), all public sector bodies are required to pay due regard to the needs of LGB people in the
design and delivery of services. Section 149(3) states:
“Having due regard to the need to advance equality of opportunity between persons who
share a relevant protected characteristic and persons who do not share it involves having due
regard, in particular, to the need to—
(a)remove or minimise disadvantages suffered by persons who share a relevant protected
characteristic that are connected to that characteristic;
(b)take steps to meet the needs of persons who share a relevant protected characteristic that
are different from the needs of persons who do not share it;
(c) Encourage persons who share a relevant protected characteristic to participate in public
life or in any other activity in which participation by such persons is disproportionately low.”
SOM is essential in order for such bodies to comply with the requirements of the Duty. Collecting
and analysing data on sexual orientation allows public sector bodies to better understand and
respond to LGB patients’ service access, outcomes and experience and to provide evidence of their
compliance with the Duty.
The Equality Delivery System 214 is an NHS tool which helps NHS organisations improve the
services provided and reduce health inequalities in their local communities. It comprises a set of
outcomes covering patient care, access and experience, working environments and leadership.
NHS commissioners and providers are encouraged to analyse their performance against these
outcomes for each group afforded protection under the Equality Act, including sexual orientation.
The proposed standard would support NHS England, Public Health England, the Department of
Health and other health and social care bodies to be more compliant with the Act than they are
currently.
In 2014, NHS England convened a national level task and finish group with representatives from the
NHS, the Department of Health, Public Health England and the Health & Social Care Information
Centre to drive forward SOM in the healthcare system, chaired by NHSE’s Director of Policy. The
push to submit an Idea to the HSCIC came from this group, and members will continue to be
engaged in the process if this application is successful.
The proposed question for health care professionals to use is as follows:
Sexual orientation:
Which of the following options best describes how you think of yourself?
1. Heterosexual or Straight
13
14
http://www.legislation.gov.uk/ukpga/2010/15/contents
http://www.england.nhs.uk/wp-content/uploads/2013/11/eds-nov131.pdf
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2.
3.
4.
5.
Z.
Gay or Lesbian
Bisexual
Other
Prefer not to say
Not known
The question has been worded so as to encompass more fully sexual orientation, sexual attraction
and sexual behaviour, and to reinforce the fact that sexual orientation is about identity rather than
sexual partners.
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 and
bisexual (LGB), including but not limited to asexual or queer15 (estimated to be a small minority of
non-heterosexuals.16
Classification 5 allows the patient not to disclose this information, as is their right.
Classification Z is not intended to be visible to the patient or healthcare professional but is needed to
account for missing data in analysis. i.e. there is no record of Sexual Orientation.
This question and classifications 4, 5 and Z differ to those currently in the Data Dictionary.17 As part
of the process during the development of this standard, there will need to be a change to the NHS
Data Dictionary.
Data flow diagrams
15
Queer is an umbrella term, used in the LGB community. As a sexual orientation it can be used to describe a
complex set of sexual behaviours and desires, or to make a statement against categories such as lesbian, gay,
bisexual or straight. Queer is an in-group term, and can be considered offensive in certain contexts and settings.
16
Office for National Statistics. ‘Sexual identity in the UK’ Part of Integrated Household Survey, January to December
2012 Release. ONS, 2014. http://www.ons.gov.uk/ons/rel/integrated-household-survey/integrated-householdsurvey/january-to-december-2012/info-sexual-identity.html
17
http://www.datadictionary.nhs.uk/data_dictionary/attributes/s/ses/sexual_orientation_code_de.asp?shownav=1
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At this stage it is not possible to postulate how this data would flow, as this will not become clear
until the requirements and impacts are understood in detail.
There will be further exploration of data flow(s) in the next stage of the process. Implementation
plans will be developed in consultation with partners in the health and social care system and the
Information Commissioner’s Office.
Document Author
Dated
Version
Status
Template used
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Heather Williams , LGF; John May, HSCIC
18 March 2015
6
Draft for Review / Draft for SMB / For submission to SCCI / Final
Accepted
SoNTemplatev1
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