All healthcare professionals are obliged by law, and by professional regulatory standards set out by the General Medical Council, to ensure your medical information remains confidential. If they fail to obey these standards, they risk being disciplined or banned from working as a healthcare professional. So the same standards apply to healthcare staff of all types. Reception staff and other non-medical staff are guided by similar principles and also risk being dismissed if they breach patient confidentiality. 

Your medical records should not be seen by anyone who is not involved in your treatment and care, unless you give them permission to do so, except in rare cases (see Third party disclosure below). Each worker (which will include reception staff) should only see the information about you that is relevant to their role. 

If you have concerns about confidentiality at a GP (family doctor) practice, you may wish to ask how information about your HIV status will be recorded in your records (for example, is it written in your file or just held in your electronic record? Is the information coded or not; is it easily visible or recorded discreetly?) and who in the practice will know (for example, only medical staff, or all clinic staff?). See GPs for more information on getting the best care at GP services.

There are two ways to give your permission to a healthcare professional to disclose your status:

  • Explicit consent. Explicit consent is when you are directly asked for consent and either agree orally or in writing, usually by signing a document saying you agree to this information being shared.
  • Implied consent. This is when your actions suggest that you consent, such as agreeing to see another healthcare professional. You should let your HIV doctor or your GP know if you do not want other healthcare professionals involved in your care to know your HIV status. Remember, though, that this could affect the quality of care you receive.

If you live in England, some of your medical information is now stored in a new way. ‘Summary Care Records’ (SCRs) are electronic records that contain information about the medicines you take, any allergies you suffer from, and any reactions you’ve had to a medicine. This information can be especially useful if you need to be treated in an emergency.

A number of safeguards are in place to keep these records secure, and to ensure that healthcare professionals directly involved in your treatment or care can access them quickly. You can choose not to have an SCR by opting out. You will need to do this through your GP practice. You can also see your SCR by asking for a print-out of it at your surgery. In the future, you should be able to access your SCR online. 

Similar systems exist in Scotland (Emergency Care Summaries), Wales (Individual Health Records) and Northern Ireland (Emergency Care Summary Records).

You have the right to ask to have any errors in your medical record corrected; you can also ask for information that you feel is sensitive, or opinion rather than fact, to be removed. Usually, the existing information is struck out (rather than completely removed) and an explanation for this change added. 

If you have asked that your medical information, or aspects of it, is not disclosed, this will continue to be respected even after your death.

Anonymous information about you and your HIV care might be used for research purposes. But any information about you will be removed if your details are being used in this way. 

HIV charities and other support organisations should also have clear confidentiality policies. This means that your personal information must be kept private – nobody can know anything about you without your consent.

Sharing information between healthcare professionals

Communication between healthcare professionals is likely to improve the quality of care you receive. For example, if your GP and your HIV doctor are able to share information about your health and any treatment, their understanding of your overall health will be better. This shouldn’t mean chatting about you in corridors or public areas, or gossiping about you. The exchange of information should be limited to what is needed to ensure that you receive the best possible care.

Any doctor you see should keep you informed about anyone they intend to share your medical information with. Communication between healthcare professionals will usually be in writing and you should always receive a copy of the letter or email. Tell your doctors if you don’t want these letters to be sent to you at your home address. 

There is one exception to a healthcare professional’s duty to keep information about you confidential. That is if sharing your medical records is in the public interest (this is known as ‘third party disclosure’ – see below).

Third party disclosure

Doctors – including GPs and specialists – could be obliged to disclose your HIV status under certain circumstances. However, disclosure without your knowledge and consent is very rare; whenever possible, you will be notified first.

Any doctor you see would be required to confirm your HIV status if a court requested this information and, in some cases, if the police requested them to. 

If your doctor believed you were placing another person at risk of ‘serious harm’ because of your HIV status, and you refused to disclose your status to that person, your doctor could inform them (for example, a sexual partner who is also their patient). ‘Serious harm’ can include the significant risk of passing on a serious communicable disease, such as HIV. They should consult you before doing this, but if you don’t give your consent at this point, they may still be entitled to pass on the information. They would avoid disclosing your identity if possible. This situation happens very rarely.

In some cases, a doctor may disclose information from your medical records, if you request them to. 

To an insurance company. If you apply for certain types of insurance such as health or life insurance, and permit the insurer to access information from your medical records, your doctor will be obliged to share this information; your HIV status may affect your application.

To an employer. An employer may ask for information about your health and your medical history; for example, if an occupational health assessment, or pre-employment questionnaire, is part of their recruitment process. You do not have to consent to this; however, it may affect your employment if you decide not to.    

An insurer or employer would not normally be given access to a patient’s medical records, but they can request a report giving information drawn from the records. You have the right to see that report, to refuse consent to the report being sent, and to ask for inaccuracies to be corrected. Doctors will usually exclude any health information not relevant to the request, so it may not be necessary to mention anything about HIV in some situations. However, the report must be truthful, so if you ask your GP to omit relevant information, they may not be able to provide a report.  

Contact NAM to find out more about the scientific research and information used to produce this section.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.