Wednesday 15 November 2023

Following the recent NHSE update on information sharing for HIV and Sexual Transmitted Infection services on 12 October 2023, BHIVA would like to clarify our position highlighting the benefits of data sharing whilst acknowledging the rights of people living with HIV to protect their status.

Provision of HIV services varies considerably throughout the UK. Where HIV services are within Infectious Disease services, but also where HIV clinics are linked to STI services, the information provided by people living with HIV may be linked to personal details including their full name, NHS number, address, contact details, medical and treatment history.

In addition, a number of services providing HIV care have moved on to local main hospital electronic patient records systems. This means that blood results, clinic appointments and letters are shared. The decision to move to this type of system was made largely because of very serious incidents affecting patient safety due to non-disclosure of HIV status and/or lack of information sharing with other hospital specialties negatively affecting patient care. Some of the decisions about data sharing to other providers were made above the level of individual clinics or hospitals/Trusts during the COVID pandemic, via the Health Information Exchange (HIE).

There is always the option for people to opt out of data sharing, however it is important for people living with HIV who attend any HIV service to be aware that they cannot assume that data will not be shared, or that their status will not be revealed by information such as treatment history.

BHIVA recommends that information sharing should be encouraged to ensure safe and optimal care. HIV services should therefore highlight to people living with HIV attending for care what information they share with other services, how this information is shared, and also how to opt out of information sharing locally if they choose to. Opting out of HIE data sharing should be possible at a local Trust level, and a process to do this should be explained to individuals who want to opt out of this. It should also be highlighted that HIV disclosure cannot be completely guaranteed as stated previously, and that people’s experience and safety may be negatively impacted by opting not to share information. The decision to opt out of information sharing should be reviewed on an annual basis.

For full details of NHSE update on formation sharing in HIV and Sexually Transmitted Infection services please follow this link.

https://transform.england.nhs.uk/information-governance/guidance/hiv-and-sexually-transmitted-infections-stis/#service_user

For further information, please contact [email protected] or for media enquiries, please contact Jo Josh at [email protected] or +44 (0)7306 391875.