Confidentiality

Confidential information may be protected by law. The House of Lords, the highest court in the land, confirmed in 2004 that “a duty of confidence will arise whenever the party subject to the duty is in a situation where he knows or ought to know that the other person can reasonably expect his privacy to be respected.”

But a ruling from 1990 set out limitations to this principle:

• It only applies to information which is actually confidential. Once information enters the public domain, it is no longer protected by confidentiality.

• It does not apply to useless or trivial information.

• Although it is in the public interest that confidential information should be protected, that public interest may sometimes be outweighed by another public interest favouring disclosure. In such cases, the public interest in confidentiality must be balanced against the public interest in disclosure.

The last one of these exceptions is probably the most important in the context of HIV.

It’s important to know that there are very strict laws and regulations in place to ensure the confidentiality of your medical records.

This means that except in very exceptional circumstances nobody can see your medical records without your permission.

Laws governing the confidentiality of your hospital HIV records are very strict – they are even stricter than those governing the confidentiality of other medical records.

Furthermore, your HIV clinic is almost certain to have a policy in place to ensure that your records and all aspects of your care meets the highest standards of confidentiality.

HIV charities and other organisations should also have very strict confidentiality policies.

This means that your personal information must be kept private – nobody can know anything about you or your medical care without your consent.

But there are some practical limits to confidentiality. Doctors and healthcare workers looking after you need to communicate to make sure that you receive the best possible care, so this means that there might be circumstances when they need to talk to one another or write letters or emails to each other about your care.

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.

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

It makes good sense for people with HIV to have a GP. It’s normal practice for hospital specialists, such as HIV doctors, to write to their patient’s GP to keep them up to date about the care they are providing. Before doing this they should obtain your consent and make sure that it’s okay with you for your GP to know that you have HIV.

The NHS is introducing electronic patient records. Your electronic records can only be accessed by healthcare workers involved in your care and they are also protected by the law and NHS confidentiality regulations. Your electronic records will list any anti-HIV drugs you are taking. This is because it’s important that doctors and other healthcare workers involved in your care know what treatment you are receiving. But this information can be removed from your records if you ask.

Some people are concerned about protecting their confidentiality when they visit the hospital, their HIV clinic or HIV charity. This could mean that they have concerns that they will be recognised by someone they know.

If you are concerned about this, then it might he helpful to remember that anyone else attending an HIV clinic or charity is likely to be HIV-positive as well and might be just as anxious as you about protecting their confidentiality.

A small number of people with HIV have been prosecuted and imprisoned for the reckless transmission of HIV to their sexual partners and medical records have been used in these cases. The police can contact your doctor and say they need to see your records because they are investigating a serious crime. Even so, most doctors would refuse access to medical records. A court order can force the release of your medical records without your consent. If a doctor is providing care to someone that they believe a person with HIV is putting at risk, then they can tell this person that their patient has HIV.

As early as 1988 a case involving two doctors showed that HIV was covered by confidentiality. An unknown health authority employee (or employees) passed information regarding these doctors' HIV status to a newspaper reporter. The newspaper intended to publish an article identifying the doctors concerned and describing their condition. The health authority sought a court order preventing the newspaper from publishing the information, or using it in any other way, which was granted.

The court noted that there was a public interest in the freedom of the press, and also accepted that there was some public interest in the information which the newspaper sought to publish. However, “those public interests [were] substantially outweighed when measured against the public interests in relation to loyalty and confidentiality both generally and with particular reference to AIDS patients' hospital records.”

Confidential medical information may sometimes be disclosed in the public interest. For example, in 1990 a court considered the case of a patient detained in a mental hospital, whose psychiatrist had sent a report on his condition to the Secretary of State suggesting that he should not be released. The court decided that the public interest in protecting the safety of others outweighed the public interest in preserving an individual’s right to confidentiality.

In certain circumstances, this principle may be relied upon to justify the disclosure of information about a person’s HIV-positive status without their consent. The General Medical Council’s Guidance to Doctors on Serious Communicable Diseases (1997) states as follows (paras 26-27):

“You may disclose information about a patient, whether living or dead, in order to protect a person from risk of death or serious harm. For example, you may disclose information to a known sexual contact of a patient with HIV where you have reason to think that the patient has not informed that person, and cannot be persuaded to do so. In such circumstances you should tell the patient before you make the disclosure, and you must be prepared to justify a decision to disclose information. You must not disclose information to others, for example relatives, who have not been, and are not, at risk of infection.”

The guidance also notes that confidential medical information may be disclosed to other health care workers if failure to disclose would put them at a serious risk of death or serious harm (para 19).

There are specific provisions about the confidentiality which attaches to a diagnosis of infection with a sexually transmitted infection: the National Health Service (Venereal Diseases) Regulations 1974. There is some doubt about the exact meaning and effect of these regulations.