More than a million people opted out of NHS data sharing within a month in a massive backlash against government plans to make patient data available to private companies observer can betray.
The general practice data for planning and research program is now on hold with no new deadline for implementation, and NHS Digital has made a number of concessions to activists in an attempt to save it.
As part of the program, GP health data would be made available to all in England, with identities in some cases removed, researchers and companies for health research and planning. The scheme is more extensive than the current GP data sharing arrangements.
But after the proposals were tacitly announced in May, doctors’ leaders rejected the brief six-week period to allow the public to opt out of the program, while privacy activists warned the identity removal process could be reversed.
The deadline was initially pushed back to September, but over the summer an online campaign asking people to unsubscribe grew. Government figures show 107,429 people got off in May. Another 1,275,153 followed in June.
“We became aware of this latest GP [data] At the end of March, ”said Phil Booth, coordinator of medConfidential, one of the groups most critical of the program. “We said, ‘Well, this is just going to explode’ … and then it exploded, just like we predicted.
“People take care of their family doctor records and their medical confidentiality. And there is one simple thing you can do, which is to tell your GP, ‘Please don’t let my data be used that way’. “
NHS Digital announced in mid-July that it would give up the September deadline and pause the program without a new start date. She will shortly launch a “listening exercise” and consultation process before launching a public information campaign. As a big concession to the critics, patients can now unsubscribe and delete their data at any time, even if they have already been uploaded. NHS Digital also promises to increase the security and privacy of the data, even while researchers are working with it.
An NHS Digital spokesperson said, “Patient data is critical to health planning and research. It is used to develop treatments for cancer, diabetes, long-term Covid and heart disease, and to plan how NHS services will recover from Covid.
“Medical research and planning benefits us all, but it is only as good as the data on which it is based. The better the quantity and quality of the data collected, the more useful it is for researching new treatments or planning good, sustainable NHS services to meet patient needs. Hence, it is important that people make an informed decision about how to share 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 care planning and research.
“We have listened to feedback on the proposals and will continue to work with patients, clinicians, researchers and charities to take additional precautions, reduce the bureaucratic burden for GPs, and increase communications for GPs and the public ahead of the implementation of the program intensify.”
Booth said NHS Digital made “a number of public promises and we’d love to see how those promises are kept. We have always said that there are pretty legitimate, ethical, research, and planning purposes that can be made of this data – it just has to be done right.
“The question is, what’s going on behind closed doors, in terms of lobbying people? [concessions] or for special exceptions to them. “