Foxglove’s take on Labour’s national conversation on NHS data: great news! Now let’s put patients back in control
Just over a year ago, we set out our views on the Labour Party, then in opposition, and its policy towards how the then-Conservative government was using our NHS data.
Tl:dr: we gave it a B. Good start; lots more to do.
Fastforward to this week, where the Labour Party, now in government, announced it wants to have a national conversation about the NHS, has launched a national consultation for everyone to feed into, and intends to launch “patient passports” that would gather each NHS patient’s entire health record into one place and “will put patients in control of their own medical history”.
We’ve had a few days now to consider what’s being proposed. Our take? This is a great start and a significant break with previous governments – who we supported our partners at Just Treatment, the National Pensioners Convention and the Doctors Association UK to take to court several times for failing to involve patients in a conversation about their health data.
A national conversation about NHS data is exactly what’s needed – and it is important to recognise that and praise Labour for breaking with the failed Conservative model of saying, essentially, don’t worry about it – we know what’s best.
The idea of the patient passport too could be a positive step forward, giving patients direct access to their entire health record – in a simple and easy-to-reach way. However, to be trusted by patients, security, patient consent and privacy protections must be baked in from day one. As a yardstick, patient passports should be at least as secure as high-street banking apps.
Nevertheless, the greater direct patient involvement in seeing what’s happening with their data is good, solid stuff.
It’s not all good news though. Health Secretary Wes Streeting published an op ed in this Monday’s Guardian (October 21, 2024) and slipped in a line that has given us concern. He said Labour’s plans “will mean the NHS can work hand in hand with the life sciences sector, offering access to our large and diverse set of data.”
Hmm. That sounds quite a bit like sharing or selling our health data to profit-making companies, probably including pharmaceutical companies – and Big Tech.
Now, in fairness to Mr Streeting, he goes on to say: “We will also work through how to get a best possible deal for the NHS in return, whether that’s extra funding, cut-price deals for the latest medicines or priority access, so cutting-edge treatments are available to NHS patients, not just those who can afford to pay.”
It’s good that the government understands it is a prerequisite of our data being shared outside the health service that any deal must deliver real, visible benefits to the NHS.
But that doesn’t change the fact that for patients to have trust in sharing their most personal and intimate health information with their doctor, they need to know they have the final say over where that data goes – and must be asked to give their consent for each additional party it will be shared with outside the NHS.
There is strong public concern about NHS data being shared outside of the health service without patients’ consent, even when anonymised. Almost three and a half million people have already opted out of their data being shared for uses beyond their individual care.
And patients have good reason to be suspicious, the Guardian reported last year that UK Biobank shared the personal health data of half a million people with private insurance companies – despite a pledge it would not do so. Then just this month, it was reported that “race science” groups promoting disgusting right-wing propaganda, had also gained access to Biobank data.
One of the individuals involved, according to the Guardian, has written pseudoscientific academic papers on: “whether black Americans earn less than white Americans because of “average intelligence differences”, comparing penis size, testicle size and “breast-buttock preference” by race, and an attempt to show that in Denmark those with “Muslim names” have lower IQs.”
If a project as valuable and high-profile as Biobank has failed to protect the security of the health data of its volunteers so badly, it’s no wonder the public is worried about what will happen to their health data once it is shared outside the NHS.
That’s where Mr Streeting and the new government have work to do. The best way to win back public trust in their health data being shared is to give every NHS patient control of exactly who they want their data to be shared with – and on what terms. This choice should let patients make a choice every time someone outside of the NHS wants to access their data, including for planning or research.
The patient passports being introduced by government could be one mechanism for making this possible. But that’s not enough on its own. Many patients, especially older people, are not online, so a consent portal that operates solely through the NHS app or a website won’t do the job on its own. The same goes for being able to feed into the government’s national conversation on the NHS as, at present, this appears to be an online-only consultation.
This isn’t a fringe concern. Our partners at National Pensioners Convention represent about a million older people in the UK – some of the people who rely on the NHS the most. The NPC estimate that 25-30% of their members aren’t online at all, while another 30-40% would have trouble navigating an online consultation or consent tool.
So that’s at least 500,000-700,000 people for whom online-only isn’t going to cut it.
Foxglove is putting together our response to the government’s consultation which we will publish as soon as we can.
We will also be putting together some suggestions for Foxglove supporters to consider including in their own consultation response as well. More on than soon – you can feed into the consultation here: https://change.nhs.uk/en-GB/.
To get that update, and all other news on Foxglove’s work, hit the button below:
For now, this is the point: the new Labour government has made a worthwhile and welcome change in how it proposes to use NHS data better, compared to previous governments. That’s fantastic and we should all celebrate it.
But there is still the serious risk of repeating the mistakes of the past by failing, ultimately, to put patients in charge of who they do, and who they do not, want their data to be shared with.
We’re going to keep fighting to help them get it right.