A perspective on the implications of losing the levels of confidentiality afforded to sexual health clinics by Yusef Azad

This content was originally published on the MEDFASH website as an e-feature on 24 September 2014 and it is reproduced here with kind permission by MEDFASH.

Yusef Azad is Director of Policy and Campaigns at NAT(National AIDS Trust) and currently works across a wide range of HIV-related policy areas including confidentiality rights. In this month’s eFeature, Yusef moves beyond HIV and offers his perspective on the implications of losing the levels of confidentiality afforded to sexual health clinics by the (soon to be outdated) regulations on sexually transmitted infections [1] . He argues that, even with improved understanding of the importance of confidentiality across the NHS, we still need some additional legal protection to allow sexual health clinics to maintain separate patient record systems, preserve patient confidentiality, and ultimately protect public health.

Confidentiality of sexual health clinic records – is it at risk?

Sexual health remains for most people a sensitive and private matter – if we go to a sexual health clinic we expect the information they record about our sexual behaviour, about the tests we have, any STIs diagnosed and the treatment provided, to be kept confidential.
And this has meant not just confidential in relation to other members of the public, but also confidential in relation to other parts of the NHS. If you go to a sexual health clinic that information is not shared, without consent, with other parts of the same hospital. It is not shared with your GP. The sexual health clinic would have to discuss with you any proposal to share some of your clinic records with another part of the NHS and you would have to agree for them to do so.

To that extent sexual health clinics have operated to a particularly high standard of confidentiality. If they did not do so, people would be afraid to go to the clinic, worrying about who would find out. People don’t want their local hospital A&E to know they got gonorrhoea on holiday in Ibiza last year. Or their family doctor to know about their recent fling. If people are deterred from going to sexual health clinics that would mean less testing, less diagnosis, less treatment, and more STIs spreading in the community with serious implications for our health.

It is so obvious that we need to keep our sexual health services confidential, that it may come as a surprise to learn we may be on the brink of losing this vital protection. But that could well be the case. Since the early 20th century regulations have been in place which have provided a legal basis for the robust confidentiality culture of our sexual health clinics. The most recent version has been the NHS Trusts and Primary Care Trusts (Sexually Transmitted Diseases) Directions 2000. But as the NHS has gone through yet another reorganisation, the health bodies cited in the current regulations have either ceased to exist (PCTs) or are very few in number and are not expected to exist in the near future (NHS Trusts). The Department of Health (DH) is planning to revoke the current regulations but is debating whether it is necessary to replace them with new regulations for the more recently established health bodies or indeed whether any form of extra legal protection for sexual health confidentiality is now needed. If no such additional protection is put in place then sexual health clinics would be subject to the general rules of confidentiality which apply to the whole of the NHS.

Why would that be so bad? After all, as the DH points out, the NHS has come forward in leaps and bounds in its understanding of the importance of confidentiality for sensitive medical information. That is certainly true. Healthcare workers are careful to get the consent of the patient before sending on information to other parts of the NHS and must heed any patient objections. But STI regulations not only affect communication, they also affect record-keeping, and that is where, in the absence of such regulations, confidentiality will be undermined.

Currently a hospital-based sexual health clinic keeps its own records, whether paper or electronic, strictly separate from the wider records system of the hospital within which it operates. If it acted like every other clinic in the hospital and put its sexual health information onto the hospital records system, then whenever its patients went to the hospital for some other kind of care the other hospital healthcare worker would see their sexual health records, even though wholly irrelevant to the sprained ankle, or whatever the patient has come in for. It would also make it far more likely that GPs would see the patient’s sexual health information in any communication from the hospital.

It is the regulations which have provided the legal basis for such a separate records system despite the additional costs possibly involved (requiring PCTs and NHS Trusts to take ‘all necessary steps’ to ensure such information is not disclosed). Without these regulations, sexual health clinics, we fear, will come under immense pressure to integrate their records with that of their hospital trust. This is precisely the sort of outcome which might deter people from accessing a sexual health clinic.

The culture established by the previous Directions will retain momentum and life for quite some time. And were such pressure for records integration to build, no doubt there would be many hospitals where the sexual health clinic would successfully make the argument for retaining separate records. But not all clinics will win the argument in the absence of a legal requirement – and we suspect over time you would have a patchwork of sexual health clinics with different levels of confidentiality in place.

Of course, were such records integration to happen, in London you could try to attend a sexual health clinic in one hospital and go for all other aspects of your care to a completely different hospital. But that choice is not available to people in most other parts of the country. And in London many hospital trusts are becoming larger and incorporating in a single institution with a single records system.

It is worth making the point that we are discussing STI records here and not the records of treatment and care for people living with HIV, a service which very often operates out of the sexual health clinic but is separately commissioned. Since HIV is a long-term condition and involves daily medication which may interact badly with other drugs, there is an acceptance that some degree of routine communication and information sharing is in the best interest of the patient. Practice varies across HIV clinics – some retain a wholly separate records system, some provide some basic information on the patient’s HIV diagnosis and medications for inclusion on the hospital records system, and some have full integration with the hospital’s system.

NAT is calling for our sexual health records to be kept confidential. And it is a call and concern shared by the British Association for Sexual Health & HIV (BASHH), Brook and many other sexual health organisations. BASHH undertook an extensive survey of 4,017 patients across 51 clinics in January 2013, looking at confidentiality issues. 61% of respondents said they disagreed with changes to the current extra legal protections on confidentiality in sexual health clinics and 58% said that the loss of such legal protection would make them less likely to attend a sexual health clinic (rising to 74% of those under 17) [2] . Service users have clearly not given their approval to any changes in the levels of confidentiality and anonymity.

This means we still need some legal basis to justify sexual health clinics maintaining completely separate records systems. The DH is in discussions to see what legal options are available. One difficulty is that the political ‘mood music’ is one of deregulation - the ‘red tape challenge’. Revoking the current regulations and not replacing them would be a handy deregulating brownie point for the DH. But that is government by numbers, not the public interest. These regulations, or an equivalent, are needed. One option being investigated is for the Secretary of State to make new regulations. Another is for the new Health and Social Care Information Centre (HSCIC) to provide guidance on this issue - all health bodies must in law ‘pay regard’ to such advice.
Without such protection, many people will be deterred from going to a sexual health clinic until their health is in a real crisis and they have no choice. But by then many others may well have been infected. We should not allow legal requirements for separate sexual health records systems simply to wither away. The sexual health of this country is being put at risk. That cannot be right.

[1] The NHS (Venereal Diseases) Regulations 1974 and the NHS Trusts and PCTs (Sexually Transmitted Diseases) Directions 2000
[2] See Helen Parker et al ‘How important is confidentiality in sexual health clinics? A survey of patients across 51 clinics in England’ Sex Transm Infect 2014;90:354355