Bad health data kills – so we need to fix this problem, and fast

Health is fast becoming the new frontier in personal data.

Partly because we virtually all have records going back the full length of our lives, but mostly because lack of access to correct health data is killing people everyday, as our founder Julian Ranger recently pointed out at the EU conference on the Data Economy.

Yet moves to open up health data with public-facing APIs, for example, are frustratingly slow, while seeming back-door deals – such as that which saw US healthcare provider Ascension hand over the records of 50m of its patients to Google – do little to increase consumer trust.

At the heart of this, as the Financial Times says, is “how this information is handled, and who reaps the value from it.”

Part of the problem, as ever when facing reinventing systems wholesale, is persuading relevant parties to consider the radical and the new.

The FT, in the same article, says: “For now, companies — and their tech suppliers — need to show they are trustworthy stewards of customer data. Being more open about what they are actually doing, and how it fits into their wider ambitions, would be a start.”

Actually, we would argue they don’t – because the onus isn’t, and shouldn’t, actually be on companies to do this. Who more appropriate to be a “trustworthy steward” of their data than the person it actually belongs to, who has most to gain from sharing it for the purposes of research or personalised treatment, and most to lose from its loss or leak?

Part of moving health data forward into the realm it deserves – that of patient centricity, where individuals are in charge of and at the centre of their own healtth record and treatment – is having the foresight to imagine a new world, where the individual, not siloes, is the focal point of health data.

Moves such as NHSx, designed to maximise data and technology within the NHS, are a good start, but rebooting our healthcare systems requires bigger and bolder steps.

Of course, earning the trust of patients with this most sensitive of data is key – but big changes starts with big ideas.

The reality is that the future of healthcare exists now – platforms, such as, where users can aggregate their health data and share it on their terms – are already available to use with the NHS, and many American health companies, as well as elsewhere around the globe.

Bringing the future to now means exploring the possibilities, not simply trying to improve what has already been shown to fail.

Here’s hoping 2020 brings just that.