The government has scrapped the deadline for the NHS Data Grab
To paraphrase a famous speech about injustice, anytime you’ve got NHS patients, doctors, senior citizens, journalists and a Conservative MP against you, your time is up.
So it proved this week when the government confirmed it was going to scrap the deadline for the NHS Data Grab.
That means the immediate threat to patients that they would have their data collected without their permission and taken away to be accessed for profit by who-knows-what private companies is – hopefully – over.
NHS Digital also said they would bin the ludicrous system where registering to opt out only stops data being grabbed in future – while your lifelong health record stays stuck in the GPDPR (General Practice Data for Planning and Research) piggy bank.
We’re beyond proud to be part of this win, along with our partners who brought the case: Just Treatment, the Doctors’ Association UK, the National Pensioners Convention, the Citizens, openDemocracy and David Davis MP.
However, we know the fight is far from over.
If we needed a reminder of that, Innovation Minister Lord Bethell appeared in front of MPs on the health select committee yesterday saying he still wouldn’t commit to writing to every NHS patient to inform them about the changes to GP data.
That makes it a lot trickier to have faith in the government’s pledge to begin a proper communication campaign that will inform every patient about these changes to the GP data. Especially when around three million older people aren’t online.
Lord Bethell also said that the IGARD process (the body that decides who can access patient data) is “becoming a drag anchor on progress” and described it as “onerous and long-winded.
That sounds as though he wants to weaken the rules, not make them stronger. How can that add up to a trusted research environment that patients can have faith in to keep their data safe from unscrupulous companies looking to make a profit?
The government has promised a new “transparent approach,” including publishing who has “run what query and used which bit of data”.
That’s great to hear. But they can’t have it both ways. Either the system clearly states who has access to GP data, what standards they had to meet and what they’re using it for, or it will continue to stoke fears about our personal information being used for private profit.
We’re consulting closely with our partners over our next steps in this case. We’ll keep you updated.
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