The National Programme for IT has been nominated for the “Most Appalling Project" in Privacy International’s UK Big Brother 2004 awards because of unresolved concerns in the NHS Care Records Service (CRS) over patient consent and data ownership.


The Big Brother AwardThe nomination list, which is published in full tomorrow, says that the NPfIT is the favourite to win the category. The award (right) takes the shape of a boot stamping on a face: a reference to George Orwell’s novel 1984.


The director of Privacy International, Simon Davies, told E-Health Insider why NPfIT had been nominated for the award:


“The approach taken by the NHS claims to be patient-centred. But it’s not. It’s all innovation-centred. The claim that patients can have an opt-out is discredited; the only way that info will not be put onto the system is that the doctor opts out, and opting out of the system comes at a huge cost."


Patients hadn’t been informed about their rights properly, he argued. “Awareness-building is important. You need to be able to inform people what the data means to them. You have to work on the assumption that that doctors have got a role to play. This has got to be built into a system."


Such a system needs inbuilt “flexibility” so that patients could opt in and out as they wish, Davies argued. While there is “some functionality that is patient-friendly", patients and doctors are not central, he believes.


Privacy International is also concerned about who has overall control of the record data on the spine. “This is a vast centralised system that puts the power into the hands of the NHS,” said Davies. “It provides the opportunity for authority to cherry-pick valuable data. Under the Health and Social Care Act 2001, the Secretary of State has control of all data. The minister is going to have a huge amount of discretion."


The NHS had won the Big Brother award for “Most Heinous Organisation” in 2000 for the initial plans to computerise patient records. Davies believes that the time has come for another award. “Nothing has changed in the past three or four years,” he said. “They do not seem to have learned any lessons nor taken cues from best practice."


The NPfIT told EHI it would be responding to Privacy International’s concerns.


Formed in 1990, Privacy International is an NGO with offices in London and Washington DC. It consists of academics, lawyers, journalists and human rights workers, and works to raise the profile of privacy and human rights issues. The Big Brother awards occur annually in 17 countries.


The awards ceremony will take place at the London School of Economics on the 28 July. The ‘winners’ will be decided by a panel of judges including Dr Ian Brown, the director of the Foundation for Information Policy Research, Wendy Grossman, author of internet privacy book Net.Wars, and comedian and TV documentary-maker Mark Thomas.


If the NPfIT wins this year, it will share in the triumph of last year’s winner, the Performance & Innovation Unit’s data sharing project. This year, the NPfIT is competing against the Safe Harbor Agreement (sic), which enables the transmission to the US of personal data belonging to EU citizens.