Your Guide To...BHIVA Standards of Care for People Living with HIV

8. Developing and maintaining excellent care

This section is really aimed at doctors and healthcare managers, but you should know about it too.

Standard 8 - Developing and maintaining excellent care

8c. Public health surveillance, confidentiality and information governance

It’s important to keep records, or data, about how many people are newly diagnosed with HIV. A record must also be kept of the number of people who are living with HIV and accessing care and treatment. This is called public health surveillance. The data is used to measure how well the ways to prevent HIV are working. It can also show how well HIV treatment is working overall, and this information can be used to plan and commission services for people living with HIV. It is also used to make sure that everyone in the UK is treated fairly and equally. The way this data is collected means that someone cannot identify you personally from it. All data is kept confidential.

Your personal medical information can only be used if you agree to it – you give consent. Sometimes, consent is ‘implied’, for example, when information has to be shared with other doctors who are looking after any complex health needs. However, that information should be shared only within that team. Consent for public health surveillance data is also implied consent.

There may be other circumstances where your clinical team may wish to share your data with someone else, for example, for research purposes. If this is the case, you should always be told what your data might be used for, and you can decide whether to agree. This is ‘explicit’ consent.

All your data should be held securely. You have the right to access your records and to have any factual inaccuracies corrected.

Key messages

  • Your healthcare team actively participates in public health surveillance. Information about you is submitted electronically to Public Health England. You cannot be identified from this data, and it is used in confidence.

  • If your doctor wants to share information about you with someone else (other than for public health surveillance), for example, for research purposes, then they must tell you clearly what it will be used for and ask your permission to use it.

  • You have the right to access your records and to have any factual inaccuracies corrected.