Enhancing surveillance of sexually transmitted infections in England with gender identity and behavioural data: the GUMCAD STI Surveillance System

Abstract

Background There has been an increasing trend in sexually transmitted infections (STIs) in England since the early 2000s. Since 2008, surveillance of STIs in England has been conducted using GUMCAD, a depersonalised dataset of all attendances at all publicly commissioned sexual health services (SHS).

Aim This article describes the piloting and rollout of an enhanced specification of GUMCAD at SHS in England.

Methods GUMCAD was enhanced in 2019 to allow SHS to report the gender identity (whether cisgender, transgender or gender diverse) of service users, as well as selected behavioural information collected during routine sexual history taking such as the number of recent sex partners (last 3 months).

Results The reporting of GUMCAD data to the UK Health Security Agency (UKHSA) has provided disaggregate data on services provided and STI diagnoses at SHS since 2008. 2023 was the first calendar year over which the majority of SHS (93%, 224/241) submitted enhanced GUMCAD data including sexual behaviours and gender identity to UKHSA.

Conclusions This enhancement to GUMCAD provides an opportunity to improve the surveillance of STIs, better understand sexual health need, and improve the uptake and targeting of existing and novel preventative interventions for STIs such as 4CMenB vaccination for gonorrhoea and doxycycline post-exposure prophylaxis (doxyPEP) in England.

Competing Interest Statement

AN was a member of the Steering Group for the pilots of the enhanced GUMCAD specification while he was an employee of Public Health England (PHE; the predecessor to the UK Health Security Agency [UKHSA]); he is now an employee of EpiConcept, a privately funded company. JW conducted analyses of the data collected from the pilots (the results of which are presented in the Appendix) while he was an employee of PHE; he is now an employee of Parexel International Limited, a privately funded clinical research organisation. None of the other coauthors reported any conflicts of interest.

Funding Statement

The first pilot was funded internally by the Public Health England Innovation Fund.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The UK Health Security Agency performs surveillance of sexually transmitted infections (STIs), including the piloting described in this article, for health protection purposes under permissions granted to UKHSA to collect and process pseudonymised GUMCAD patient data under 1Regulation 3 of The Health Service (Control of Patient Information) Regulations 2020 and Section 251 of the National Health Service Act 2006. Ethical approval was not required for this analysis.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Footnotes

Conflict of interest statement: AN was a member of the Steering Group for the pilots of the enhanced GUMCAD specification while he was an employee of Public Health England (PHE; the predecessor to the UK Health Security Agency [UKHSA]); he is now an employee of EpiConcept, a privately funded company. JW conducted analyses of the data collected from the pilots (the results of which are presented in the Appendix) while he was an employee of PHE; he is now an employee of Parexel International Limited, a privately funded clinical research organisation. None of the other coauthors reported any conflicts of interest.

Funding statement: The first pilot was funded internally by PHE’s Innovation Fund.

Data Availability

The data that support the findings of this study have been assessed by the UK Health Security Agency Office for Data Acquisition and Release as having sensitive personal information and are therefore not publicly available to protect participant privacy. However, some aggregate data may be available upon reasonable request from the UKHSA. Requests can be directed to DataAccessukhsa.gov.uk.

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