Policy responses and statements
- Name of organisation:
- Department of Health
- Name of policy document:
- Policy consultation on confidentiality and disclosure of patient information - HIV and sexually transmitted infection (STIs)
- Deadline for response:
- 31 October 2006
Background: The Department of Health (DH) is undertaking a consultation to clarify policy on patient confidentiality and disclosure of information on STIs including HIV. The outcome will benefit those who use services in that they will know what to expect. This paper also takes account of representations to DH from sexual health professionals seeking clarification of the circumstances when they may need to disclose confidential information, including about a patient’s HIV status, both with and without the patient’s consent.
This paper takes account of a recent High Court decision involving as claimants, the Health Protection Agency (HPA), an acute hospital trust and a primary care trust. The claimants were seeking a declaration relating to the common law on disclosure, the duties imposed by the European Convention on Human Rights and application of the legislation on disclosure of information on sexually transmitted infection (including HIV). However, the Judge decided not to make a decision.
The Department of Health invited comments on the questions set out in this paper plus any other relevant issues. Additionally, Annex 3 sets out scenarios which illustrate some of the dilemmas in this area. These were included to ground some of the consultation questions in the real situations in which health care professionals from time to time find themselves. The scenarios invited responses on what you would do or how you would advise a colleague seeking professional advice from you. Comments on the scenarios were also invited from other interested groups.
COMMENTS ON
DEPARTMENT OF HEALTH POLICY CONSULTATION
ON CONFIDENTIALITY AND DISCLOSURE OF
PATIENT INFORMATION: HIV AND
SEXUALLY TRANSMITTED INFECTION (STIs)
The Royal College of Physicians of Edinburgh is pleased to respond to the Department of Health on its Policy consultation on confidentiality and disclosure of patient information: HIV and sexually transmitted infection (STIs). The College notes that the document makes no references to the VD Act (Scotland) or to Scottish law and so realises that this document may have different applicability in Scotland compared to the rest of the UK. However, basic principles with respect to clinical practice, GMC and NHS guidance and the ECHR apply across all of the UK.
Uncertainty exists on some legal issues relating to disclosure of information on STIs including HIV, so the College welcomes this initiative. Clarity is required and consistency with the GMC’s recommendations should be a priority. Patients need to remain confident in the processes for maintaining confidentiality to ensure they are not deterred from accessing essential services for treatment of STIs and HIV.
The consultation document clearly sets out the statutes which relate to medical confidentiality in this area including:
The breaching of medical confidentiality is clearly a serious step for a physician to take and must be justified by significant benefits for an individual or the public in general. HIV remains a serious condition associated with considerable morbidity, both physical and psychological, despite advances in therapy. All reasonable measures should therefore be taken to prevent the transmission of HIV and in certain circumstances this may involve the breaking of medical confidentiality.
Any breach of medical confidentiality should be predicated on the following principles:
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The patient should have been made aware of the risks of transmission of HIV through sexual contact.
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The patient should have been informed that failure to inform their partner of their HIV status and subsequent transmission of infection may lead to criminal prosecution.
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The patient should be given sufficient time to inform their partner themselves before confidentiality is broached. This time period will be variable but a period of two to three months would be reasonable where the patient reports the use of condoms.
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Prior to informing a partner of their potential risk of infection, the index patient should be told that it is going to happen.
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After informing a partner of potential infection, the index patient should be told that this has been done.
The paper raises a number of specific questions.
Para 5.2: A strict interpretation of the Sexually Transmitted Diseases regulations results in a highly restrictive approach to information sharing and most GUM clinicians would take an approach that includes disclosure with consent. The most commonly held interpretation is likely to be option (iii). Most clinicians would not consider that the regulations might be interpreted as excluding disclosure with the consent of the patients. But there is variation of interpretation among experienced GU physicians suggesting that the regulations should be redrafted, revoked or supported by additional guidance.
Para 6.2: There are separate references to the 1916, 1974 and 2000 regulations throughout the document. It would be helpful to include these (or extracts from them) as an annex.
Para 7.2: This raises the issue of informing a partner of potential infection without the index patient’s consent.
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It would be justifiable to contact the partner without the index patient’s consent subject to the principles above.
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This would apply whether or not the partner was a patient of the treatment centre involved with the index patient.
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Disclosure to a known partner might not take place where they are un-contactable, for example, resident abroad.
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The initial decision on whether disclosure should be made or not should lie with the physician in consultation with other health care professionals and should be clearly documented in the case record. The physician should be aware that any decision may need to be justified in the courts and that they may wish to seek legal advice from their Trust.
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The VD Regulations/Directions on STIs only provide for disclosure to other health care professionals. As such, they would appear to have been superseded by the NHS Code of Practice (2003) and Human Rights Act 1998.
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It would be inappropriate for the health care professional to inform an individual that they could report their partner to the police for reckless transmission of HIV or other serious STI, since the provision of legal advice is not within their area of expertise. However, each new patient diagnosed with HIV should be informed that the transmission of the infection to others, who are unaware of their HIV status, may result in a criminal prosecution.
Para 8: This section deals with disclosure to those who are not sexual contacts, such as relatives, social service departments and the police.
- Disclosure of HIV or other serious STIs to those who are not sexual contacts should only occur in exceptional circumstances where there is a significant risk of transmission of HIV, for example, history of disruptive behaviour including biting of carers.
Para 10.1: It is noted that primary care are playing an increasing role in the testing and treatment of STIs. A query is raised as to whether the VD Regulations/Directions on STIs should also apply in primary care.
- The VD Regulations/Directions on STIs appear to have been largely superseded by the Human Rights Act and NHS Code of Practise. Sharing information for the benefit of the individual patient or public health benefit should apply equally in this setting.
Para 11.2: The use of anonymised information for surveillance and monitoring is noted to be of benefit both to the individual patient and to society.
- The provision of such information for this purpose is appropriate, assuming appropriate safeguards are in place to ensure anonymity and prevent misuse.
Annex 3 describes a number of clinical scenarios and requests how a GUM clinician or a health adviser should respond to each.
SCENARIO 1
As the health adviser you have reason to believe that an HIV infected male patient has not told his current female sexual partner of his HIV status. You think he is not using a condom consistently and he has already infected a previous female sexual partner who is being cared for in a different clinic. His viral load is such that he is not yet on antiretroviral medication. He has had other casual partnerships as well as the current “steady” sexual relationship.
What do you think you should do?
General: The basic principles outlined above should be adhered to, to ensure that the patient is aware of the risk of transmission of HIV and given an opportunity to inform their partner before the health care professional does so.
Discussion: This is a relatively commonplace scenario. There will be some difficulty in establishing whether he is using condoms reliably, but the fact that he has already infected someone suggests an ongoing risk. Decisions on action will depend on the issues raised in response to 7.2 (iii) above, including:
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Does he understand and acknowledge the risk posed to a previous partner and can you be convinced that he will use condoms reliably in future?
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Is there is evidence of risk of death or serious harm to his current partner that overrides the duty of confidentiality, in which case GMC guidance and EHCR would support disclosure.
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Does disclosing his status against his wishes lessen or increase the risk overall (ie is it in the public interest?)
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If, for example, he drops out of care, the risk will be increased in comparison to simply commencing antiretroviral therapy.
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If it becomes public knowledge that disclosure occurred, will it dissuade people from coming forward for testing?
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What is the risk that his partner is already infected and can she be tested without breaching his confidentiality?
Actions:
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Explore fully knowledge and attitudes regarding transmission, condom use, obtain contact details.
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Discuss in full with clinical team including consultant responsible for patients care. Consider wider discussions with Caldicott Guardian/legal advisors if questions remain.
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If no success in persuading him to inform regular partner and disclosure is decided upon, inform him that his regular partner will be told without his consent. Attempt to arrange an appointment/meeting where he can be supported in informing his partner.
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Consider commencing antiretroviral medication to minimise risk – particularly if regular partner is untraceable.
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Trace a carer involved with his regular partner (eg GP) and consult regarding informing her.
SCENARIO 2
An HIV positive man who has sex with other men is asymptomatic but has a high viral load. He has so far refused treatment. He has told you (as the GUM clinician) that he has multiple sex partners in your small city and regards it as the duty of his sexual partners, and not his responsibility, to ask about condoms - otherwise he will assume they are also HIV positive. He occasionally gets paid for sex (usually the receptive partner in such sexual encounters). There is only one GU clinic in your area. What do you think you should do?
General: Again, the principles above should be applied. The patient should be advised that the lack of request for condoms from his sexual partners is unlikely to provide a defence should they become infected.
Discussion: There is evidence of risk of death or serious harm to multiple partners that overrides the duty of confidentiality. However, harm reduction and ensuring public benefit overall are likely to feature heavily in decision making in this case.
It would appear that the only practical disclosure would be highly public – it seems unlikely that particular individuals could be identified.
Does disclosing his status against his wishes lessen or increase the risk overall (ie is it in the public interest?)
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What effect (in terms of risk reduction) would making his status public have ie how many high risk encounters would be avoided?
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Would he drop out of care or move to another area?
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If it becomes public knowledge that disclosure occurred, will it dissuade gay men from coming forward for testing, or reduce their disclosure of risk activity in the clinic?
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It seems unlikely that he is the only HIV positive man having unprotected sex with other men. Therefore, the disadvantages of disclosing his status relate not only to his actions, but to the actions of all other HIV positive men, both tested and untested, occurring as a result of the disclosure.
Actions:
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Attempt to obtain contact details: trace contacts if possible.
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Counsel him regarding the legal implications of reckless transmission. Inform him of the possibility of a patient being diagnosed positive in the GUM clinic and identifying him as a contact. Ensure that he is aware that the source of infection could be established by genetic testing and that all patients will be counselled regarding the legal implications of reckless transmission.
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Discuss in full with clinical team including consultant responsible for patient’s care. Consider wider discussions with Caldicott Guardian/legal advisors/public health department.
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Consider commencing antiretroviral medication to minimise risk.
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Initiate local public health actions to publicise risk without disclosing patient’s identity.
SCENARIO 3
A male, attends the GUM clinic with a chancre on his penis and is diagnosed with primary syphilis. He thinks he was infected from sex with a sex worker a few weeks before. He has a long-term partner whom he had sex with one week before attending the GUM clinic. She is six months pregnant. He refuses to inform her or for the clinic staff to make contact as she will then realise he has had other partners. He is an aggressive man, knows his “rights” and tells you that as this is the GUM clinic, you are not allowed to breach his confidentiality by informing his partner without his consent. You, as the GUM clinician, are very concerned because of the possibility of congenital syphilis and the need for the partner to be seen and given appropriate treatment. What do you think you should do?
General: The physician has a duty of care to the pregnant partner and, once baby is born, to the child. The basic principles above should again be applied giving the patient every opportunity to inform their partner, but should they fail to do so confidentiality should be breached.
Discussion: Again, there is evidence of risk of death or serious harm to the partner and the unborn child that overrides the duty of confidentiality according to the NHS Code of practice, GMC Guidance and EHCR. Time constraints may restrict the opportunity to negotiate in this case. Other issues are staff, patient and partner’s safety and the possibility that he will pursue a legal case. It seems unlikely that the risk of adverse outcome through disclosure would outweigh the risk to the partner and child through transmission.
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Agree an approach in discussion with the clinical team, the Caldicott Guardian and legal advisors.
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Obtain details, if possible on the sex worker and his regular partner to allow contact tracing.
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See him in a safe environment. Counsel him regarding the clinical and legal implications of transmission and the legal position. If remains resistant to disclosure, inform him that disclosure will be made without his consent and offer him the opportunity to be present.
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According to his response make appropriate arrangements for the safety of partner or staff.
SCENARIO 4
An HIV positive man has infected two women. The first woman was his long-term partner and tested positive shortly after his HIV diagnosis. The second woman he infected was someone he had a brief relationship with two years after he was diagnosed and she is now also a patient of yours. The second women asks you (as her GUM clinician) when this ex-partner knew he was HIV positive as he had not told her about his diagnosis. You can see from his notes that you asked him to inform his new sexual partner (the second woman) when their relationship began two years previously (which he said he had done but in retrospect clearly had not). Do you tell her the information she requests? Do you tell her that she can report the matter to the police? Do you say that if she brings a case to court the evidence can be subpoenaed but you are not able to disclose to her otherwise because the information is confidential?
General: It would be inappropriate to disclose information about the potential source patient unless he gave his consent. It would be appropriate to advise the woman to discuss this with her partner directly, but should she require disclosure of information from his case notes without his consent then she would need to seek a court order, either via a solicitor or the police.
Discussion: As discussed in the response to 7.2 (vi), this decision depends on the interpretation of GMC guidance and common law. The justification for disclosure in this case would be for the purposes of punishment of a serious crime. Neither this policy document nor the NHS Code of Confidentiality defines to whom such disclosures should be made. It seems reasonable to limit disclosures to other exposed individuals to those that prevent death or serious harm. Disclosure to exposed individuals for the purposes of punishing a crime might increase the stigma associated with HIV (if for example an individual took the information to the media rather than to the police). Hence there is an argument that it is not in the broader public interest to disclose to any exposed individual for purposes other than the prevention of death or serious harm. You would not therefore tell her the information she requests. Disclosure for the purposes of investigating or punishing crimes would be restricted to legal authorities. She could be advised (as all patients following a positive diagnosis) of the possibility of reporting to the police if she suspects that he knew he was HIV positive. She would be informed that the information could not be disclosed to her, but if she reported to the police, would be passed to the police or CPS in the course of an investigation or court case.
Actions:
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Counsel her regarding the legal position with regard to disclosure.
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Inform her that she can report her suspicion to the police. If the police investigate the case, the information may be released.
Discuss the Caldicott Guardian and legal advisors the approach to release of information should the police investigate the case.
SCENARIO 5
A male, who is a well known regular attender at the GUM clinic (usually comes for treatment of his gonorrhoea) attends this time and is not at all well. He has lost some weight and has oral candidiasis. You suspect he may be HIV positive, but he refuses to have a test. You know he has a long-term regular partner and also many casual partners. You also know from his history that he says he never uses condoms. You ask him to inform his partner of your suspicion that he may be HIV positive. He refuses. As you suspect he is probably HIV positive, do you have a duty to inform his regular partner that she might be at risk? Do you think she could bring a legal case against you as the doctor, for not informing her of the potential HIV risk? You suspected her partner to be positive and this is documented in his notes.
General: If a physician was virtually certain, based on clinical findings, that an individual had HIV then it would be reasonable to treat them as such, for example, a patient presenting with Kaposi’s Sarcoma or oral hairy leucoplakia. Where there are alternative clinical diagnoses then the assumption of HIV infection is not justifiable and subsequent action should not be taken. In this case, the patient has weight loss and oral candida with a history of gonorrhoea – although advice should be sought from a number of different physicians, this is unlikely to be seen as conclusive evidence of HIV infection in itself.
Discussion: The issues in this case are similar to Scenario 1. The crux of the case is whether decisions based on a clinical diagnosis of HIV carry the same weight as those based on a laboratory test. If the suspicion is sufficiently great to be documented in the notes then it would seem to demand action. She probably is justified in bringing a case if not informed of the risk. It may be that discussions around disclosure will prompt him to test.
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Explore fully his knowledge and attitudes regarding transmission, condom use, legal implications.
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Discuss in full with clinical. Consider wider discussions with Caldicott Guardian/legal advisors if questions remain.
If no success in persuading him to inform regular partner or to be tested and disclosure is decided upon, inform him that his regular partner will be told without his consent.
HIV TEST COUNSELLING
The discussion paper does not make any recommendations regarding HIV testing. It would seem appropriate that those being tested for HIV be informed of the potential limits of confidentiality prior to having a test and that this should be incorporated into their pre-test counselling. Only by doing so can a patient make an informed choice regarding the decision on whether to have a test.
Copies of this response are available from:
Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.
Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939
[31 October 2006] |