The backlash to a controversial NHS data gathering exercise is gathering pace after an internal document conceded patient confidentiality could be undermined.
NHS England’s care.data scheme will mean that from March 1, unless a patient opts out, information including their NHS number, date of birth and postcode, will be added to a national database.
Family doctors have voiced fears about the scheme and now groups which represent patients in the Westcountry have called for it to be shelved while a more robust advertising campaign is mounted.
Debbie Pritchard, chief executive of consumer health champion, Healthwatch Cornwall, said they had real concerns.
“Our main issue with this scheme is around the lack of any major publicity and that it is an opt-out process rather than opt-in, as well as clarity around which third parties could access the information and how identifiable it is.
“It is disgraceful how little clarity there is around this scheme,” Ms Pritchard said, adding that more information could be obtained at Healthwatch websites.
Meanwhile Healthwatch Devon is staging its own survey as concerns mount that a national leaflet drop has failed to inform patients.
Executive director Miles Sibley said that so far 70 people had contacted the organisation.
“There is an issue about informed consent,” he said.
“We want to know if people have received their leaflet, whether it made sense and whether people will be allowing their GP to pass on data.”
Mr Sibley said they were still analysing the response and that the consultation would close at the end of next week.
The care.data programme will take patient information from clinical records held by GPs and marry it with hospital data with the initial aim of mapping out trends and needs.
However, there are concerns about whether such a valuable resource will be sold on to organisations outside the NHS, such as drug or insurance companies.
There are also fears that it may be possible to perform a jigsaw identification of some patients.
The concerns have been heightened after the publication of a risk assessment compiled by NHS England warning that patients could be “re-identified” if data is combined with other information.
It said that questions over privacy issues could jeopardise the patient/GP relationship and warned that the database could be targeted by hackers.
The risk assessment emerged after NHS statistics revealed that health services were losing or breaching the safety of 2,000 patient records every day.
A study by the BMA has found that only 29% of people recalled receiving a leaflet about care.data while 45% were unaware of the scheme.
Dr Chaand Nagpaul, chairman of the BMA’s General Practitioner’s Committee, said: “The BMA is deeply concerned with the Government’s public information campaign for care.data.”