With the help of you and lots of others, we've paused the NHS Data Grab. But the real fight for the future of the NHS starts now. Tom Hegarty of the Foxglove campaign writes to tell us what is next.
In July the government threw up its hands and scrapped the September deadline for the data grab. The immediate threat of patients having their data collected without their say-so and accessed for profit by who-knows-what private companies is – for now – on hold. It's also great to see NHS Digital taking patient data off the cliff edge - opting out of sharing your health data later won’t mean it stays stuck in the new system for good.
These were obvious errors and genuine public worries about them drove over a million new people to opt-out in June alone.
At Foxglove, we’re proud to have helped force this shift, with our partners in the case: Just Treatment, the Doctors’ Association UK, the National Pensioners Convention, the Citizens, openDemocracy and David Davis MP.
The real fight for the future of the NHS starts now
Foxglove has set out four minimum requirements that any plans to centralise GP data must meet:
- The government must make the case for a nationwide pool of GP data
- The government must write to every household in England to explain the planned changes to GP data
- GP data must be firewalled from other parts of government
- The NHS should set and publish a clear, rigorous standard to protect public benefit in any corporate access to GP data.
The first three of these are straightforward. The government needs to explain, beyond slogans like “Data Saves Lives”, why the NHS needs to collect the cradle-to-grave health information of 55 million people in one place.
Is a nationwide ‘data lake’ really necessary for planning, commissioning and research? Those are different things.
Gathering data into one place hasn’t always helped the front line in the pandemic. Some hospital trusts reported so few gains from the Covid datastore and dashboard run by Palantir/Faculty for NHS Digital that they set up DIY systems on Excel.
If they can make a compelling case, they then need to write to every NHS patient to explain the changes they want to make and why.
We’ve seen a lot of flip-flopping on this. The former Health Secretary Matt Hancock seemed to agree to write to people in his final days as Health Minister.
But, more recently, Innovation Minister Lord Bethell (of the vanishing phone messages) insisted that the government still won’t commit to writing to every NHS patient about the changes.
It’s ridiculous to suggest you can reach 55 million people in a simple and clear way -including people not online or whose first language is not English - without writing to every household, probably alongside TV adverts. We've all had vaccine texts. We've all had government leaflets. This is doable – if they want to do it.
It will also be impossible to build trust in a giant new pool of patient data unless it is clearly firewalled from other parts of government - like the Home Office which has been embroiled in repeated controversies over NHS data sharing.
That leaves the big question: how will NHS Digital maintain patient trust and protect the public benefit for the NHS whenever a private company wants to develop products or services from our health data? Do patients support any use at all of their data by private companies?
There’s no answering this question without openly debating with people what public benefit in the future of health data should mean. Here’s our view at Foxglove.
First off – no company that could damage patient trust belongs anywhere in this system. This rules out shady security-linked tech companies like Palantir who weaselled their way into the NHS during the pandemic. Palantir have no place in permanent NHS data infrastructure – full stop.
The NHS Digital website says data is never shared ‘for commercial purposes’, which implies it’s never shared for profit. That’s false. For years, private companies – including consultants for the cigarette company Philip Morris for example (thanks to medConfidential for this example!) – have been allowed to access health data for research.
You could argue some of this has helped the NHS. Some of it definitely hasn’t.
The FT recently revealed other unfair data deals where more companies have taken the NHS for a ride. The government needs to set out how it will stop any drug or tech company from making an unfair profit off the health service ever again, in ways that damage the NHS, in future.
NHS Digital must explain how any partnership with companies will not abuse health data for profit and treat patients’ personal information with the dignity and respect it deserves.
‘Data Saves Lives’ is a slogan, not a plan. People want to feel safe to contribute their health data for the good of the NHS. Data can save lives, but, until officials get to grips with the fears that drove millions of people to opt out, they’ll struggle to prevent many more doing the same – let alone convincing those already gone to opt back in.
Some concerns can be fixed by holding data in a 'trusted research environment'. But the government also needs to hear concerns about companies freeloading off the nation’s health data – a resource that we all pay for.
Keeping benefit for the NHS when dealing with global corporations isn’t straightforward. What won’t work is what the government has done so far: closed-door meetings and cosy chats at Davos with tech and pharma firms. NHS data belongs to the people - and the people should have a say in its future.