The care.data patient data harvesting plan is to go ahead after NHS England said that it had “listened carefully” to objections for the past six months and put in place safeguard to prevent data from being hacked or misused.
The proposals were put back following vociferous objections from privacy campaigners and GPs. They argued that the plans were unnecessary and undermined the confidential patient-doctor relationship. The plans for anonymisation of the data, meanwhile, were criticised for the ease with which they could be de-anonymised.
The information that will be taken from GP patient-record databases and exported to the care.data database will include a patient’s date of birth, NHS number and postcode – but not their name – as well as their confidential medical information.
That, warn privacy campaigners, will be enough for anyone with basic analytics skills to de-anonymise the data in order to identify individuals.
The health secretary Jeremy Hunt, who is a staunch supporter of the plans, has said that the data will not be shared with insurance companies for commercial reasons. However, many insurance companies carry out research and will be able to access the data under this criteria.
NHS England is now planning pilot schemes in six areas across the country covering up to 265 surgeries and 1.7 million patients. The areas include Hampshire, Blackburn and Darwen in Lancashire, Leeds and Somerset. Patients that want to opt out will have to write to their GP or their patient data will be extracted from their GP surgery and uploaded to the database. Some may need to opt out a second time, after opting out earlier this year.
The full scheme will be rolled out shortly after.
NHS England claims that the scheme will enable health researchers to find new correlations between illnesses and their causes, as well as identifying instances of poor data.
However, campaigners remain concerned that the proposed anonymisation methodology will not protect individual patients and that sensitive patient records could fall into the hands of commercial organisations, be de-anonymised and used accordingly.
Phil Booth, head of the campaign group Med Confidential, told the Daily Mail that nothing had changed with the programme: “The basis of the programme is unchanged – identifiable medical information will be extracted from the GP record of every man, woman and child in England.
“This data will be centralised and made available in various forms to an open-ended array of organisations and companies for ill-defined purposes.
“It’s all very well to make promises, but patients must be able to trust those promises are true. NHS England cannot fudge what it says to doctors and patients, or it risks another crisis of confidence. We look forward to reading what NHS England is actually proposing.”
However, NHS England’s national director for patients and information, Tim Kelsey, said that the scheme would benefit the nation and help create “a more substantial picture of our nation’s health”.