NHS patient record leaflet campaign halted
Victoria Macdonald
Health and Social Care Editor
Your patient records were going onto a central database – unless you opt out. But the government has ordered authorities to stop sending out explanatory leaflets, as it analyses the consent process.
The government has ordered health authorities to stop mailing out information leaflets on the system designed to put patient records on to a central computer system because of concerns that it did not make it not clear how people could opt out.
The £220m Summary Care Record (SCR) system in England is designed to put all 50m patients’ records on the NHS ‘spine’ so they can be accessed in emergency situations or by out of hours doctors. But it was designed so unless a patient actually said they did not want to be on the system, they were presumed to agree.
In June, the Department of Health announced two reviews of the SCR, to establish whether it was clear how to opt out and what should go on to the record. Currently, as in Scotland and Wales, only details of allergies and medication will be put on the spine. But plans in England include ‘enriched’ records, which may mean putting in recent test results or outcomes of a visit to the GP.
Channel 4 News has also learned that, despite calling the reviews, in July alone nearly 400,000 records were uploaded – a leap from the 270,000 the month before – bringing the total number of patient details now on the centralised system to nearly 2.5m.
The British Medical Association has already called for the upload to be stopped because of “serious misgivings about everything to do with care records including the way consent has been gained.”
When we asked the Department of Health why the programme had not been suspended until the reviews had been completed, a spokesman said: “We believe the decision on whether to create new Summary Care Records must continue to be taken locally by GP practices and Primary Care Trusts.
“We are fully committed to the specific reviews we have announced in relation to the information sent to patients about the Summary Care Record and the process by which they can express their preference, and the review of the content of the record.
“All new mailings of letters informing patients about the Summary Care Record have been paused while this review takes place.”
A recent analysis of the system by University College London found that 80 per cent of patients did not remember receiving the leaflets or had simply thrown them away.
There is also no information on how children can opt out, although the Department of Health said that parents could inform their GPs if they wanted this to happen.
That detail is not in the information leaflet – as Channel 4 News pointed out to Dr Simon Eccles, the medical director of Connecting for Health, which is in charge of the SCR. Dr Eccles said he had not realised this was the case and said he would look into it.