Best Use of Law
Stop the GP Data Grab
I can’t think of many situations where frontline doctors, patients, journalists, lawyers, pensioners and a Conservative MP, all work together as one.
The Campaign
In 2021, the Government announced a plan to take confidential cradle-to-grave health records of all 55 million GP patients in the UK and combine them into an unprecedented data lake. Instead of opting in to this plan, people had to opt out to prevent their data being taken before the June deadline. The scheme was soon dubbed the ‘GP Data Grab’.
It represented a huge change to how UK health information is handled, yet the Government did little to publicise it, announcing changes in complicated language on one page on the NHS website.
The plan said ‘third parties’ would be able to access this pool, including commercial companies, without explaining which companies and in what circumstances.
A coalition (Foxglove, Just Treatment, Doctors’ Association UK, National Pensioners’ Convention, The Citizens, openDemocracy and David Davis MP) formed to challenge the plan and the Government scrapped the deadline for opting out altogether, then paused the scheme.
The whole coalition are so proud to have worked on this campaign and to have sent a message that the creeping threat to the security of our health data will be resisted at every turn. The battle isn’t over – but this is a great start. Join us now to help fight the next one.’’
Martha Dark, Foxglove Director
The Change
The coalition’s campaigning cut through to national newspapers, TV and radio, who all began asking politicians about the data grab. Representatives from the coalition appeared in media around the country, explaining the concerns of doctors, patients, and older people who rely on the NHS.
The coalition prepared an urgent legal challenge and public donations raised more than £47,000 for this case.
Thanks to the tireless campaigning of medical data privacy campaigners medConfidential, nearly a million people opted out in a single month.
Days before the deadline, the Government pushed the date back to September. It also made some positive noises about storing GP data in a ‘trusted research environment’. It didn’t, however, say how that would work, who would get access, on what terms, and what safeguards would be put in place. The date for opting out was also pushed back to the last week of August.
The coalition continued campaigning while the next stage of the legal challenge prepared to force the scheme to halt until its problems were properly and publicly addressed.
Finally, in August, the Government announced it would scrap the deadline for the data grab. The scheme appeared to have been put on indefinite pause.
The Future
The Government has not formally scrapped plans for the GP Data Grab so the coalition continues to keep a watchful eye on developments.
The coalition is incredibly grateful to everyone who supported this campaign. They are keeping an eye on things, and will be in touch the moment things change again.
Who else was involved?
This campaign was created by a wide coalition, including tech justice non-profit Foxglove, patients’ organisation Just Treatment, non-profit frontline doctors The Doctors’ Association UK, campaigning organisation for older people the National Pensioners’ Convention, journalism non-profit The Citizens, openDemocracy and David Davis MP.
MedConfidential worked tirelessly to support the millions of people who opted out of the scheme.
The coalition were supported by an expert legal team of Robert Palmer QC and Julianne Kerr Morrison from Monckton Chambers.
Thousands of supporters and members of the public supported our crowdfunder to help make this work possible.
