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Mr. Goodman: 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 ask the Minister some questions that relate specifically to my constituent. On the "Today" programme earlier this year, her predecessor, the right hon. Member for Barrow and Furness, said in relation to my constituent:
namely, the mistake in Helen's records. That Minister went on to say:
So, may I ask this Minister whether it would have been possible to correct the mistake, considering the large number of NHS bodies to which the mistaken information was distributed, as so many different bodies held it?
The then Minister also said on the same programme:
May I ask this Minister whether that is correct? How can it be correct when a patient has the right to have such records removed only when they are judged to be causing, or to be likely to cause, that patient substantial and unwarranted damage or distress?
In a further letter to me dated 5 May, the right hon. Member for Barrow and Furness said:
"is removed from those systems for which the Department of Health is legally responsible as data controller".
May I ask the Minister whether that has happened yet? If not, by what date will it happen?
The former Minister wrote to me in a letter dated 30 November:
On that point, can this Minister clarify what would happen were my constituent to be, for example, taken suddenly into hospital? Would any notes made go into NHS computer systems? If so, would my constituent have to leave the NHS, so to speak, all over again to get any new records removed from those systems—not that she would have taken any decision to re-enter the NHS in the first place?
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.
Other NHS patients will be as concerned as Helen—some media discussion on the matter has already occurred—about the confidentiality of their records, if those records end up on a national system that a large number of NHS bodies and individuals, including social workers for example, can access. After all, those records will hold data set down by nurses, health visitors, midwives, physiotherapists, psychologists, laboratory staff, sexually transmitted disease and addiction workers, ambulance crews and so forth. It is a long list. Those records will contain information about such sensitive matters as sexuality, ethnicity, genetics, mental health, intellectual impairment, illicit drug use, imprisonment, abortion, contraception, impotence, paternity, infertility, HIV, personal relationships, domestic violence, rape and abuse in childhood—again, a long list.
The right hon. Member for Barrow and Furness set out in his letter to me, dated 4 May, apparent safeguards, which will, in future, he claimed, protect patient privacy and confidentiality. He set those out under certain headings such as legitimate relationships, role-based access control, the patient's sealed envelope, opting out of information sharing, stop noting, and so on. I do not have time, and perhaps it is not my function, to explain to the House what those safeguards are in detail, but I would like to ask the Minister some
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questions about them, and perhaps if she does not have time to answer all of them tonight, she might indicate that she would be willing to write to me in due course.
The Parliamentary Under-Secretary of State for Health (Caroline Flint) indicated assent.
Mr. Goodman: I see the Minister nodding, which indicates that she will write to me if she has to do so.
Will there be the computer facility to withhold part of an individual's record from NCRS, as I have seen it argued that there will be no such facility? What trials, if any, of the envelope software in clinical settings have taken place, and what did they find? In his letter to me, the right hon. Member for Barrow and Furness said that in certain circumstances, health professionals will be able to break the envelope seal. He wrote that
"this action can only be justified in specific circumstances, is audited and can be notified to the patient".
Who, therefore, will decide whether the patient is notified, and how?
In his letter to me, the right hon. Member for Barrow and Furness said that, in some cases,
Under what circumstances precisely can they do so? Is my constituent correct in asserting to me that third parties will be able to access a patient's data without that patient having the right to know whether third parties have accessed their data and whom those third parties were? The story that I sketched out at the beginning was an illustration of the claim that my constituent has made to me.
What assessment will the Department make of the effect on the nation's health of significant numbers of people, potentially, withholding important information from their doctors or from other health professionals because of concerns about confidentiality? What assessment will it make of the possibility of hackers altering data held on the NCRS and falsifying medical or other records? Will the NCRS and the proposed identity cards database be linked and, if so, under what circumstances is it proposed that the police or other agencies will have access to the records held on NCRS? Finally, what assessment of the clinical need for an NCRS has the Department made?
In conclusion, I recognise that serious issues about patient confidentiality and privacy arise under the current part-computer, part-pen-and-ink system, so the concerns that I raise are not entirely new. I acknowledge that a national computer system might, in some circumstances, help treat patients quickly who would otherwise not be treated so quickly. I realise that Governments of any colour have a difficult task in striking the right balance between, say, developing patient treatment on the one hand and protecting patient privacy on the other. Above all, I concede that new technology itself throws up new challenges to confidentiality and privacy.
I remain concerned that there are, in respect of the NCRS and as my hon. Friend the shadow health Secretary said, "serious unresolved issues" on patient confidentiality. I have tried to raise some of those issues in the context of the story, which is still unfolding, of my constituent, Helen Wilkinson.
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