Paul Goodman
From Nhs It Info
(Wycombe, Conservative)
House of Commons Debate (16 Jun 2005)
"I am extremely grateful to Mr. Speaker for granting me this Adjournment debate, in which I want to tell the story to date of my constituent, Helen Wilkinson, and her medical records. The story raises profound issues in relation to civil liberties, especially privacy and confidentiality. . . Helen works as a national health service practice manager. Indeed, she has worked in the NHS for some 20 years. So when it comes to the NHS, NHS offices, staff, patients and records, it can fairly be said that she knows what she is talking about. Some time ago, Helen discovered that the University College London Hospitals trust had sent computer records of every hospital medical treatment that she had ever received to a private company, McKesson, which holds a mass of NHS records. Those records are then passed on, as Helen's were, to computer systems used by the NHS. Helen's records thus became available to several NHS bodies, such as the Thames Valley strategic health authority, Wycombe primary care trust and so on. Helen asked to see her records under the Data Protection Act 1998, as she is fully entitled to do, and she discovered when she examined them that there was a serious mistake in them. She was effectively and, I repeat, mistakenly, registered as an alcoholic. Helen resolved, given her anger about the mistake, her concern about the many people who have access to even the correct parts of her record, and her anxiety about the even larger number who might well have access to it as the NHS computerisation programme proceeds, that she wanted her records removed from NHS systems altogether. It is important to explain that, as matters stand, NHS patients have the right to object to data about them being held in a form that identifies them, but only when that causes or is likely to cause substantial or unwarranted damage or distress. It is not clear, if those data are held by a number of NHS bodies, as Helen's are, who decides whether damage or distress is caused or is likely to be caused. I wrote to the then Minister responsible, the right hon. Member for Barrow and Furness (Mr. Hutton), last autumn. . . I asked the right hon. Member for Barrow and Furness to grant Helen's request. I received a reply from him dated 5 November that explained: "The removal of patients from the systems that Ms Wilkinson has identified is neither simple nor straightforward". It added that the ethics advisory group of the Care Records Development Board was considering the matter. Helen then took a drastic decision, but the only proper decision that she believed was open to her. She decided to withdraw from the NHS as a patient altogether so that her records—including, of course, the mistaken registration of her as an alcoholic—could be removed from NHS computer systems. So, in summary, my constituent argues that she has had to withdraw from the NHS to protect her privacy. . . I want to discuss some wider issues raised by Helen's story, which I tried to illustrate at the start of my speech. I said that Helen's story raises profound issues in relation to civil liberties—in particular, privacy and confidentiality. It does so partly because her evolving story is bound up with the evolving story of the NHS computerisation programme. Helen's records, like those of others, are held partly on paper and partly on computer. Obviously, not all NHS staff throughout Britain have access to the paper records and not all NHS bodies nationwide have access by means of their computer systems to the computer systems of other NHS bodies. That situation will gradually change. As I understand it, the last seven years-worth of records held on the NHS-wide clearing service, or NWCS, which is a hospital computer system, and records held on GP computer systems will eventually end up on the NHS care record service, or NCRS, into which information from NHS Direct will also flow. At this point, it is important to grasp that the Care Records Development Board, to which I referred earlier, is recommending that patients should, in future, as the fully functioning NCRS comes on-stream, not be able to opt out of having a national care record. That is indeed a potential challenge to privacy and confidentiality, with serious civil liberties implications. . ."
