Concern over NHS database of gay men

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A government database used to store intimate details of gay sexual behaviour is to replace the current free access to sexual health information across London.

There is major concern from HIV charities and overwhelming hostility from a public consultation to the proposal.

The London Gay Men’s HIV Prevention Partnership (LGMHPP) is a central fund that is contributed to by London’s NHS trusts and that is administered by commissioners.

They have proposed radical changes to London’s HIV prevention initiatives, slashing the budget for information resources, such as booklets, websites and advertising campaigns in the gay press, in favour of sexual health interviews and a central database of gay men.

“We surveyed over 16,000 men and the majority said they preferred access to written information.

“A relatively small number said they’d like information from a health worker on the gay scene,” said Ford Hickson, Senior Research Fellow at the Department of Health funded research body, Sigma.

“Under this new plan, if you don’t get interviewed, you don’t get information – many men will miss out.”

Just 17% of London’s gay men say they would be willing to talk to a sexual health worker on the gay scene, compared with 68% who wanted information via the web and 57% who preferred to access sexual health information from reading the gay press.

The new scheme would require thousands of volunteers to converge on bars and clubs to obtain intimate details of gay men’s sexual behaviour, in order that safe sex ‘lapsers’ can be ranked according to risk, recorded on a database and only then given information which is deemed appropriate.

With no evaluated pilot of this initiative, and no evidence that supports it as an effective strategy, HIV charities fear it could undo years of work and alienate many men who do not want to access services in this way.

The draft commissioning intentions also indicated that gay men may not be aware that the details given would be used in this way.

They indicated that an effective way of getting men to give the required information would be to approach them on the scene and ask them to participate in research about safer sex.

The plans were unanimously and emphatically criticised by professional agencies working in the HIV sector who, in a joint letter to commissioners, stated that the new plans were unfit for purpose, unfeasible to deliver and were likely to be unacceptable to the majority of men who have sex with men (MSM) in London.

There has also been concern that the new scheme is in breach of the Equality Act (Sexual Orientation) Regulations, 2007, as information services are being detracted for gay men but not for other groups.

“Restricting gay men’s access to sexual health information and forcing them to have these interviews is a preposterous plan and it’s not just HIV charities that are concerned,” said Matthew Hodson, Head of Programmes for GMFA, the gay men’s health charity.

“A public consultation was held which vehemently opposed the plans, but that seems to have been ignored.”

The consultation process was deemed by the Compact Advocacy Programme at the National Council of Voluntary Organisations (NCVO) to be in breach of various codes of the Compact Agreement between government and the voluntary sector, as it allowed only a minimal response time and disregarded or misinterpreted the issues raised.

In addition, the consultation did not follow the Cabinet Office’s Code of Practice on Consultation.

Jess Crocker, Compact Advocacy Officer, said, “The supposed-consultation which took place was completely out of line with the best practice set out in the Compact.

“We need to see a new consultation, where responses are actually listened to, before any changes to funding or services take place.”

The public consultation reported that gay men were ‘overwhelmingly hostile to the strategy’ and that ‘there was broad agreement that the proposal would not be effective in reducing transmission of HIV; that it would reach fewer gay men than are currently reached by HIV prevention initiatives and that it would not be acceptable to the majority of gay men and especially those gay men who had the greatest HIV-related information or support needs.’

However, the NHS commissioners’ response to the consultation stated that ‘the strategic goals, values and indicators for success were generally welcomed’ by the public and HIV sector.

“We expected the public consultation to influence these HIV prevention plans,” admitted Hodson.

“But when these overwhelmingly hostile views are interpreted as generally welcoming by the commissioners, then clearly this hasn’t happened.”

The South London HIV Partnership has already started creating a ‘single electronic data network designed to make it easy to track individuals’.

Their priority is to ‘register all newly diagnosed HIV positive south Londoners and then work backwards to register the whole population of people with HIV in South London’.

As well as those who are registered they intend to ‘follow up clients who have not registered’, sparking fears of supposed confidential records being reviewed.

In a recent Guardian newspaper poll of 1,026 GPs and hospital doctors, more than 60% said they feared that medical databases could be vulnerable to hackers and unauthorised access by public officials from outside the NHS and social care.

Doctors were also concerned about the potential for bribery or blackmail, and about clinicians not adhering to the rules.