More than a million people withdrew from sharing NHS data in a month in a huge backlash against government plans to make patient data available to private companies, the Observer can reveal.
The general practice data for planning and research program is now on hold without a new implementation date, and NHS Digital has made a series of concessions to activists in an attempt to save it.
Under this program, GP health data for everyone in England, with identities partially removed, would be made available to researchers and businesses for research and healthcare planning. The system is more extensive than the current data sharing agreements of general practitioners.
But after the proposals were quietly announced in May, doctors’ executives opposed the short six-week deadline for the public to opt out of the program, while privacy activists warned the process deletion of identities could be reversed.
The deadline was initially pushed back to September, but an online campaign encouraging people to opt out developed over the summer. Government figures show that in May 107,429 people withdrew. In June, 1,275,153 more followed.
“We learned about this last GP [data] seize at the end of March, ”said Phil Booth, coordinator of medConfidential, one of the program’s most critical groups. “We said ‘well, it’s going to explode’… and then it exploded, just like we predicted.
“People care about their medical records and their medical confidentiality. And there is one simple, straightforward thing they can do, is tell their GP “please don’t let my data be used in this way”.
NHS Digital announced in mid-July that it was dropping the September deadline and putting the program on hold, with no new launch date. It will soon begin a “listening exercise” and a consultation process before launching a public information campaign. In a major concession to critics, patients will now be allowed to opt out at any time, with their data deleted even if it has already been uploaded. NHS Digital is also committed to increasing data security and privacy, even as researchers are working with.
A spokesperson for NHS Digital said: “Patient data is vital for healthcare planning and research. It is used to develop treatments for cancer, diabetes, along with Covid and heart disease, and to plan how NHS services recover from Covid.
“Medical research and planning benefits us all, but it is only good because of the data it is based on. The better the quantity and quality of data collected, the more useful it is for researching new treatments or for planning good sustainable NHS services to meet patient needs. It is therefore essential that people make an informed decision about sharing their data.
“We take our responsibility to protect data very seriously, and it will only ever be used by organizations that have a legal basis and a legitimate need to use it for the benefit of health and safety planning and research. care.
“We have listened to feedback on the proposals and will continue to work with patients, clinicians, researchers and charities to inform new guarantees, reduce the bureaucratic burden for GPs, and intensify communications for GPs and the public. before the implementation of the program. “
Booth said NHS Digital has “made a bunch of public promises and we really want to see how those promises are kept. We’ve always said that there are some pretty legitimate, ethical, research, and planning uses that can be made of this data – you just have to do it right.
“The question is what is going on behind closed doors at the moment in terms of lobbying against these [concessions] or for specific exceptions thereto.