Revamping HIV Official Statistics together with stakeholders
Following the publication of our HIV Official Statistics in October 2024, there was a lot of media backlash due to an increasing number of people arriving in the UK from abroad with HIV diagnoses. The language we used within the release did not help with destigmatizing this population, so we decided to embark on a terminology revamp to ensure that terms used in our publications do not fuel stigma, health inequalities or negative images of migrants.
During 2024 and 2025, the UK Health Security Agency (UKHSA) engaged in an ongoing stakeholders’ review on language used in the annual HIV official statistics, including focus groups, workshops and a bespoke survey. We engaged people living with HIV, voluntary and community sector representatives, and professional associations such as the British Association for Sexual Health and HIV (BASHH) and the British HIV Association (BHIVA). We held a special interactive session at the spring BHIVA 2024 conference and invited proposals for terms to be used to describe people arriving to the UK with HIV diagnoses, as well as explorations on gender and sexual identity.
Following feedback from various stakeholders across sectors, the UKHSA proposed changes, most notably on new HIV diagnoses, probable routes of exposure, sexual orientation, and gender identity. The terminology that was agreed with stakeholders was implemented in the HIV Official Statistics 2025.
The changes we made
A full list of changes we made for the HIV Official Statistics 2025 are available in the Appendix of the HIV Official Statistics 2025 publication.
Feedback suggested that using ‘new diagnoses’ for people who were already diagnosed elsewhere and outside England may be misleading. We therefore changed this definition so that new HIV diagnoses only include diagnoses first made in England, and exclude people diagnosed with HIV before continuing care in England.
To retain a category of people previously diagnosed abroad, we have agreed on the term ‘people diagnosed with HIV before continuing care in England’ with our stakeholders. It may be a mouthful, but it has worked to deter negative media attention. We are inviting suggestions to shorten this for next year’s publication.
Stakeholders were particularly vocal in changing and simplifying the way we reference gender identity, sexual orientation, and probable route of exposure. We therefore simplified the abbreviations as follows, fully defining them at the first mention in the report:
- for gay, bisexual and all men who have sex with men, the abbreviation is ‘gay and bisexual men’ (instead of GBMSM or sex between men)
- for heterosexual men or men who acquired HIV through sex with women, we abbreviate to ‘heterosexual men’ (instead of men exposed through sex with women)
- for heterosexual and bisexual women or women who acquired HIV through sex with men, we use the term ‘heterosexual women’ (instead of women exposed through sex with men)
Key adult population groups
With a view to highlight further HIV changing epidemiology and have a sharp focus on inequalities, we also identified five key adult population groups throughout the report as being of interest. This is due to relatively high rates of new HIV diagnoses that are continuing to either plateau or increase. Key adult populations now include:
- Ethnic minority gay and bisexual men
- White gay and bisexual men
- Black African heterosexual men
- Black African heterosexual women
- Other ethnic minority heterosexuals
Collaboration and patience leads to positive outcomes
This year’s Official Statistics were published on 7 October – so far we have received a lot of positive feedback from the communities and stakeholders on report’s readability, length and, in particular, focus on five key population groups. Media provided balanced and respectful coverage too, which was a bonus.
What did we learn? That doing it together is always better! You just have to allow time for a change to be well managed and to show that we can listen.
Dr Tamara Ðuretić, Consultant Epidemiologist and Head of HIV Section, UKHSA