Guide to HIV Healthcare Confidentiality

posted: 15/12/2010

A new guide for people living with HIV explains your rights to confidentiality in healthcare and what you can expect. The guide, Personal information and the NHS, goes through common concerns people living with HIV have about how the NHS treats the privacy of information about HIV status.

It explains how personal information will be handled, and gives practical advice about what to do if people have any concerns.

Know the facts and take action

This guide helps people with HIV understand confidentiality and privacy rights. It encourages people to ask questions and make concerns known, which NAT hopes will help improve things for everyone. If a person with HIV feels that their personal information has been mishandled, armed with the facts in this guide, they can take action.

Confidentiality is protected in the NHS in the following ways:

• NHS staff should not talk about someone to anyone else either inside or outside the NHS without the patient’s consent; this includes talking to family members and friends of the patient
• NHS staff should not leave names visible anywhere. They should therefore cover up names on paper files or close computer screens and electronic medical records
• All paper records should be kept in a secure place and all computerised records should have electronic protection, such as secure logins and passwords.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), told us:

‘Many people living with HIV have experienced concerns relating to confidentiality of their status and in healthcare this is especially important. In order to receive the best healthcare, sometimes this does mean sharing your personal information but people living with HIV should be able to do that and feel confident that their information will only be shared appropriately and with their consent. NAT has developed this guide in order to set out the basic principles of confidentiality within the NHS, as it can be a confusing area and many people do not fully understand what the rules – or their rights – are.’

guide: Personal information and the NHS is here
 

NAT's policy report Confidentiality in healthcare for people living with HIV provides useful background 

Clinics Guide to Law and HIV

posted: 23/04/2010

Have your say about the draft guidance for HIV clinics from BHIVA / BASHH about HIV transmission, the law and the work of the clinical team, 2010. The deadline for your comments is Friday 21 May 2010.

There have been prosecutions for reckless transmission of HIV in the UK since 2001 (Scotland) and 2003 (England & Wales). The prospect of prosecutions raises complex questions among medical practitioners about their ethical and legal responsibilities related to HIV transmission, particularly around disclosure of information on HIV status.
 

Although established generic ethical and professional principles continue to apply, certain features of the HIV epidemic have required special consideration.
 

An underlying principle in the provision of clinical care for people with HIV is the need for a secure and confidential environment in which extremely sensitive matters can be frankly and fully discussed. The importance of ensuring that full trust is maintained by people with HIV in their clinical services is fundamental, not only for the health of people living with HIV but also for people who may wish to seek information or testing and thus for the wider public health.
 

This guidance document sets out these responsibilities, and how these relate to the roles and responsibilities of health care professionals when caring for individuals infected with HIV.
 

Roles and responsibilities of Health Care Professionals

• Health care professionals have a central role to advise and support patients and to maintain confidentiality according to professional guidance and the law.
• For HIV positive individuals, advice must include the routes of HIV transmission, how to prevent transmission, with information about safer sexual practices and the use of condoms.
• Discussion of sexual health needs must take place regularly according to relevant BASHH guidelines to enable the giving of appropriate advice.
• There is individual and public interest in maintaining confidentiality; this may be outweighed in order to prevent serious harm to others.
• It is important when considering breaching confidentiality to weigh up all potential harms as there may be situations where disclosure of HIV status to protect a sexual partner results in considerable harm to an individual e.g. domestic violence.
• In situations where a health care professional believes that an HIV positive individual continues to put close contacts at risk their duties and subsequent action depend upon the type of contact (see figure one).
• No information should be released to the police unless there is verified consent from the patient or there is a court order in place.
• It is up to an individual patient to make a decision about complaining to the police and health care workers should remain impartial during discussions with patients.
• Those involved (complainant and defendant) in cases of reckless transmission are likely to need specialist legal advice and support and referral to THT direct would be appropriate.
• Sources of further information are listed in appendix two.

Vulnerable Groups

There are special considerations with regards cases of alleged reckless transmission in those under 18, or anyone with learning difficulties, discussed in section 5.
 

You can download the document and then submit any comments using this online form. 
 

Please make your comments here by Friday 21 May

Healthcare Confidential

posted: 19/04/2010

NAT have produced Confidentiality in healthcare for people living with HIV. Why does medical confidentiality matter for people living with HIV? What can you expect from the NHS? What difference will the introduction of electronic medical records and changes in NHS information sharing mean for people living with HIV?

This report deals with contact tracing of sexual partners, prosecutions for reckless HIV transmission, testing in different settings, and the new NHS medical records IT systems.
 

Reassure, train, monitor

The report recommends the NHS should do more to reassure people with HIV about their confidentiality, including displaying more prominent information about NHS confidentiality policies. It proposes that NHS staff, particularly those providing new HIV testing, should have early training in HIV and confidentiality. NAT recommends that the NHS IT programme must be regularly monitored, including feedback from people living with HIV.
 

NAT will very soon publish a simple confidentiality in healthcare guide for people living with HIV, explaining what rights people living with HIV have, and what to expect from the NHS. NAT will put this out this Spring.

Confidentiality in Healthcare for people living with HIV        pdf 2.6Mb

or as a direct download from NAT

Psychologists and Confidentiality

posted: 08/03/2010

A 20 page booklet of guidance from the British Psychological Society advises psychologists working in the NHS how to deal with HIV confidentiality where people may be exposing their partners to HIV. The guidance – ‘Criminalisation of HIV Transmission – guidelines regarding confidentiality and exposure’ has best practice guidelines, sections on dealing with police enquires and on disclosing information to partners, and what the various codes of ethics and types of professional guidance say.

These guidelines on HIV confidentiality and disclosure were developed to help clinical psychologists where HIV-positive clients have not disclosed their status to their sexual partners and there is a significant risk for HIV transmission. They have also been developed to assist clinical psychologists when clients believe they have contracted HIV under these circumstances.

This 2009 booklet costs £4.70 to people who are not members of the British Psychological Association.
 

Removing Your Electronic Medical Record

posted: 26/05/2009

NHS patients can now delete the electronic summary of their treatment from the new national medical database.

The decision represents a significant concession in data protection policy following talks between health service officials and the Information Commissioners' Office (ICO).

Until recently the Department of Health resisted pressure from sceptical patients and doctors critical of the security risks generated by confidential records being transmitted across the NHS broadband computer network known as the Spine.

Many people with HIV have significant concerns that news of their HIV status could become widespread or that the data could be made public, lost or misused.

Department of Health changes of mind

Only last month, officials described the cost of deleting individual summary care records (SCRs) from the system as prohibitive. The Department of Health had offered instead to "mask" or "suppress" unwanted files, making them difficult to access – a process that would nonetheless leave personal details on the database.

SCRs are being introduced as part of an NHS-wide initiative being rolled out across the country to provide clinical staff with information on those they treat.

Any doctor or nurse will have instant access to a summary of a patient's past medication, adverse drug reactions, allergies and conditions – which could be useful if that patient is unconscious or unable to recall vital details.

SCRs are also being used to record confidential treatment requests including end of life plans, where people ask to be allowed to die at home or enter instructions such as "do not resuscitate".

Bolton and Bury in first wave

Pilot schemes began in Bolton and Bury, and so far more than 280,000 SCRs have been created nationally. The Department of Health says that 98% of people who have had the advantages of SCRs explained to them are in favour.

But Dr Gillian Braunold, a medical director of the programme, acknowledged that "a significant minority" of people "don't want to have a summary care record". The new position, she said, was that "the deletion option is there if [individuals] are not happy … They can choose to have [their SCR] deleted physically."

The only exception would be if the patient's SCR file had already been used, in which case it would be archived for "medico-legal" reasons, she added.

A few rebel GPs have been encouraging patients to opt out en masse. There are worries that an individual other than relevant clinical staff could gain access to such sensitive data.

One Hampshire GP, Neil Bhatia, has asked the ICO whether it considers the SCR policy is consistent with data protection principles.

Opt Out or Delete

Connecting for Health (CfH), the NHS agency developing the records system, had already granted patients the right to opt out of the scheme at an initial stage – resulting in no SCR being created.

The latest complex issue concerned whether those enrolled on to the SCR database should subsequently have a right to have their file thoroughly purged from – rather than merely "masked" within – the system if they withdraw consent.

The dispute was resolved in talks between the Information Commissioners Office and Connecting for Health. The Information Commissioners Office has usually decided that personal information that is no longer required should always be deleted.
 

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