The Government is to reject the objections of any patients who do not want their medical records on its new centralised computer system.
An eight-page letter outlining how patients’ opt-out requests are being rejected was placed on the website of NHS Connecting for Health – the Government agency responsible for the computer scheme – on Friday night.
Earlier in the day, Professor Sir Liam Donaldson, the chief medical officer, had faced fierce criticism from the British Medical Association for demanding that GPs should “shop” patients who say no to the database.
Yesterday, it became clear that Sir Liam wanted the names and addresses of objectors in order to write to them to tell them that their request would not be granted because their reasons were not “genuine”.
Yes, the chief medical officer wants GPs to shop their patients.
The DoH letter (43Kb PDF) says,
[you] raised some specific concerns about your personal health information being held electronically in a NHS database… indicating that having your information held by the NHS in this way may cause you substantial unwarranted distress.
Substantial and unwarranted distress is mentioned because it relates to a ‘right’ granted by the Data Protection Act (the right to prevent processing likely to cause damage or distress). Patients have attempted to assert this right (with some following the advice printed in the Guardian) in order to withhold information from the Spine. The letter is being sent to these patients.
I am afraid that I am unable to agree with your request. The reasons that you gave as the basis for claiming substantial and unwarranted distress are not, as I hope I have made clear in the Annex, based on an accurate understanding of the summary care record. The Department of Health believes that the summary care record will benefit both you and the clinicians that care for you in that it supports them to provide better care. There needs to be, therefore, a genuine reason linked to substantial and unwarranted distress, for the NHS not to process your information.
Well, I have two problems with this: first, that we have to assert such a right in the first place (i.e. why is consent assumed, instead of requested?); second, that the ‘DoH’ can disregard what is in fact a genuine concern held by many patients. Why can we not simply say “I don’t want my data stored on the Spine and I accept the consequences”?
The answer is that the ‘public interest’ outweighs your right to privacy – in my opinion an authoritarian point of view.
The Annex attempts to give a “detailed response to the reasons for claiming distress”. A few of the responses in the Annex effectively agree with the assertions made in the patients’ letters. I wonder if the DoH will take patients’ words for it when they respond that they remain genuinely distressed.
The NHS IT Info site has a page listing a number of articles relating to privacy.
I found the poll (370Kb PDF), cited by the Guardian, Computer Weekly and so on, that suggests 51% of GPs will not or are unlikely to upload patient data without consent. The document makes for interesting reading. I feel sorry for the GPs caught in the middle of this.
A reader writes,
It is anyway not clear that the CMO is the appropriate person to reply to these letters (which are formally DPA S.10(1) notices). It is the “data controller” who is obliged to respond to a s.10(1) notice, and as yet the data controllers are still the GPs, not the DH.
The DH’s response is not the last word: it can go to court. S.10(4) of the DPA states: “If a court is satisfied, on the application of any person who has given a notice under subsection (1) which appears to the court to be justified (or to be justified to any extent), that the data controller in question has failed to comply with the notice, the court may order him to take such steps for complying with the notice (or for complying with it to that extent) as the court thinks fit.”
So I would guess that the campaign’s next step will be to refer the CMO’s letter to a court for a s.10(4) adjudication. Or possibly to request the GPs on whom the notices were served to respond personally, rather than pass the buck to the DH. Or perhaps both.
It seems utterly wrong that the patient must go to court in order to attempt to assert his right to privacy rather than the Department of Health simply agreeing with the patient’s request. Of course, the patient shouldn’t have to make such a request in the first place, but apparently the Government’s approach (assumed consent) saves money.
A quote springs to mind:
Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end, for they do so with the approval of their own conscience.
- C.S. Lewis
The Times reports today that a man travelling on the London Underground was stopped by a British Transport Police officer on the grounds that he was carrying a potentially lethal weapon – a cricket ball.
He was questioned for ten minutes, the ball was confiscated, a stop and search form was filled out, and he was given a verbal warning.
This seems to be an over-reaction.