Will mass opt-outs leave NPfIT summary care record project in chaos?

Martyn Thomas, visiting professor of software engineering at Oxford University’s Computing Laboratory, has expressed concerns about the leaflet that’s being given to patients who want to opt out of having their medical details to a summary care record.

He said:

“Opting out leaves patients with the same level of risk that they have currently, and the new summary care record introduces new risks: for example, that the information will be wrong or assumed to be complete when it isn’t (most databases have a high proportion of incorrect data), that details of your medical history will be seen by people who should not have seen it, and that vulnerable people will be forced to reveal details of their medical history (by being compelled to log in to their HealthSpace website).


“If patients are to make an informed decision about whether to opt out or not, then they need the scale of these risks to be explained to them.

“What is the level of injury currently caused to patients by the NHS because the SCR does not exist? How will the NHS ensure that the only people who have access to a patient’s SCR are clinicians who have a legitimate clinical need for the information?

“How will sensitive conditions ( for example abortions, HIV/AIDS, other STDs) be kept confidential if the SCR contains test results and prescription details?

Why has the Department of Health decided that even the most confidential data from a patient’s medical records should be available to researchers and administrators through the Secondary Uses Service?

“The leaflet should answer these questions and others, honestly and fully. Until these issues have been openly discussed and agreed, it will not be possible to draw up an adequate security specification for the summary care record. The fact that implementation is already underway raises the spectre that when patients find out what has been implemented, they will opt out in sufficient numbers that the NHS will be left in chaos.

Links:

NPfIT leaflet says national database could save your life

Martyn Thomas – Wikipedia

Martyn Thomas – profile on British Computer Society website

Oxford University computing laboratory

Patient confidentiality and central databases – Professor Ross Anderson

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CfH are never going to discuss these issues. They are increasingly desperate to stop patients from opting out, as their ludicrous claim that the SCR will save significant numbers of lives shows.

Perhaps it's up to GPs to point out the very real risks of uploading data into this government's hands. The GPs are the data controllers, after all.

And I'm sure that more that 250,000 have opted out already.

Neil

www.oaklandsoptout.info

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The most worrying thing about the SCR is that you can't control what each clinician sees. In fact it has already been shown that it is not just the clinician that gets to see the data. CfH argue that there is no way to know what may or may not be relevant at the time. If this is the case, then the only solution would be to allow all clinicians access to the same data.

I dont think the NHS will be left in chaos if people opt-out, just red faced with wasting some money (they should be used to that by now), which may explain why those who promote the SCR usualy fail to mention all the others with access.

It should be remembered that it is not just about the SCR, it is about how info is shared. For example blood test, x-rays, referrals etc will be done via the NCRS meaning that data on pateints will still be collected. The sharing of info with others and having a searchable database for others (police? Social Services?) is the main reason for spending £12-£20 billion. Patients opting out of the SCR will not stop that info being shared.

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