Plans to transfer the medical records of all NHS patients in England from GP surgeries to a central database accessible to drug companies as well as academics have been criticised by a major inquiry into the growth of personal health data.
Forcing patients to take part in the care.data scheme unless they make a specific request to opt out is not acceptable in its current format, according to the authors of a report by the Nuffield Council on Bioethics published last night.
They also warned that promising to protect people’s data by removing identifying details such as names and full addresses must come with warnings that this process of “anonymisation” can no longer guarantee the safeguarding of their personal details and identity.
Professor Martin Richards, the chair of the Nuffield Council’s working party, said the consequences for the misuse and abuse of personal health data are now so severe that perpetrators should face criminal prosecution and even imprisonment if found guilty of an offence.
Professor Richards, a retired Cambridge academic, said that the Department of Health’s care.data initiative has been marred by bad planning and poor explanations about why GPs are being asked to upload all their patients’ records and hospital admissions to a central database run by the Health and Social Care Information Centre.
“We know what the reaction was to care.data. Clearly it was not done in a way that satisfied peoples’ expectations about what would happen with their data,” Professor Richards said.
Although the original plans to roll out the care.data scheme were postponed for six months last year because of public outrage, the health and social care centre has set up pilot schemes in a handful of GP clinics across England with a view to expanding the scheme nationwide at a later date.
However, there are no plans for the centre to change from an opt-out system to an opt-in system where people will be given the automatic right of not taking part if they prefer, which many experts believe would kill the scheme off because so few people would actively seek to have their medical records copied onto a central database.
Asked whether he and his committee would be happy with the opt-out status quo, Professor Richards said: “If that is so, then the basic position we would take is that we would not be satisfied.”
Other members of the working party said that it was important for the public to be properly informed about who will have access to their data in years to come and what sort of use they will put it to.
“People are still not clear about the purposes to which their data will be used and who will have access to that data. There should be a clear statement about who will have access to the data and what it will be used for,” said Peter Mills, a member of the working party’s secretariat.
Professor Mike Parker of the University of Oxford said: “Consent is very important. It is clearly very important that people know what their data is going to be used for.”Reuse content