Data Sharing

Overheard in the Pub

It is often said, perhaps more tongue-in-cheek than with real seriousness, that you can tell more about an English person by asking where and what they drink than through any of the glossy market segmentation tools with which we get plagued from time-to-time.

This isn’t meant to be an alternative version of Douglas Adams’ three stages of in the History of every major Galactic Civilisation (How can we eat? Why do we eat? And where shall we have lunch?). Rather, it is a recognition that – from Perrier water to Bacardi Breezers; from Real Ale to Jaegerbombs; from nice little bistros to spit-‘n’-sawdust boozers (or, God forbid, the bottles of gin at home) – in this country, we are what we drink.

So it is in the sure knowledge that I will be judged, and hence with no little trepidation, that I feel I need to share with you a conversation I overheard in our local pub a couple of weeks ago. Which, for context, is a family pub, not tied to one of the big breweries, in a little London village. (See? You’re judging already.)

Talk turned, as it so often does in our little corner of the World, to care.data (I bet you’re judging us even more now…). But there was a strange twist when it came to arguments about data sharing – I heard some opinions I’d never heard before:

• You say it is important for my care for information to be shared? OK, let’s pretend I believe you. How can I insist upon it, even if my GP or hospital doesn’t want to?
• I want my data shared within the NHS but not the private sector.
• Oh, alright then, I don’t mind the private sector seeing my records – but only if they pay their full wodge of tax in the UK. I’ll tell you who I’m OK with.
• Can you share my care records with my homeopathist please? She says it would help.
• If I share it with the centre can’t the police and security forces see it?
• Can you send me a list of who holds what data about me?
• I don’t see why commissioners can’t see my records. They might make better decisions as a result. Can I ask for this too?
• …and I want to be asked again each time before it is shared – I don’t know what might be in my records in the future, and may want to rethink.

Now, some of these were pretty left-field, I must agree (and I confess I made one up). And it isn’t the whole list. But what is perhaps important is that most of these people are thinking very differently from the simple models of consent and legality that seem to be current guidance. Yes, processing must of course be legal, but when individuals consider how information about their own care should be shared, their concerns can be very different from what policymakers might expect.

There is another common theme as well, and perhaps more important: almost everyone assumed that the data was theirs – and they had the right to decide what should happen to it. Arguably, in a future world of complex health needs, personalised care and capitated budget models, or in a world of outcome-based commissioning where the patient’s views on their care can affect the income that a provider receives, that belief will only increase. If we are looking for individuals to become more engaged in the management of their own care, in all kinds of ways, then it could well be that they will want more of a say – and in more detail – about how the information about that care is secured and managed.

This isn’t just another simple plea for more consultation by the larger data sharing projects. And nor is it about explaining (again) how there are major health benefits to be won from opening up that data to appropriate research – although doubtless that is true, it is just a tiny part of the picture.

It is, however, about a form of empowerment.

Ok, so not all of the different ideas that might arise from patients will necessarily be wise to implement – I’m not even going to think about the person who wanted to access their NHS records using their Facebook login! But we do need to hear what they might want in the longer term – and not just in the context of the large centralised projects. A conversation needs to happen. The service might hear things that surprises it.

Therefore, if anyone from the centre wants to come down to the Dog & Ferret, we’d be more than happy to help out with a few ideas.

Mind you, they’d have to buy their round.

Mine’s a Babycham. Don’t judge.