The cold logic of Iceland’s personal data breakthrough

Just a few weeks ago, the Startup Iceland conference revealed an initiative to give every Icelander a digital copy of his or her health data.

It can do this because Iceland is the only country in the world with a patient-facing API for accessing this information.

Having the API s a start. But to make this data genuinely useable, Icelanders need some kind of application in which to store it. Which is why the Icelandic Directorate of Health (DoH) turned to digi.me.

Digi.me will be familiar to MEF Minute readers. It’s one of the start-ups also known as a PIMS (personal information management service), and is a highly vocal proponent of the personal data economy ethos.

Digi.me’s app lets people gather and curate information about themselves. This can include photos, emails and social media posts. But it can also pull in data from other sources like banking apps and… health data APIs.

So, in this Icelandic scenario, a citizen will be able to retrieve and store their medical information in a secure, private library on their device.

This data will include prescriptions and medications, vaccinations, allergies and medical admission history. And it means that any time a doctor has a query he or she will be able to ask permission to see it.

The patient will then expose their data on his or her own terms. The doctor, meanwhile, will get answers that are accurate, up to date and wide-ranging. And the whole process will take seconds, rather than (potentially) days.

Trials prove it. In the US, the OpenNotes project sought to see what would happen when patients were given access to their own records.

OpenNotes met some resistance from doctors at first. They feared it would lead to more work and more critical scrutiny. But the programme’s results disproved this and no single clinician in the pilot dropped out.

It started in 2010 with just 100 primary care doctors across three medical institutions. But today it is available across the US and has 13 million registered patients.

Patients engaged too: 80 per cent read their notes, and 99 per cent said the practice should continue. 70 per cent said they were taking medicines better.

Digi.me and its project partner Dattaca Labs will be hoping for a similar outcome. Digi.me’s voluble founder Julian Ranger has spoken publicly in the past about his desire to test the PIMS model on a national basis. And Iceland – a modern country, but one with a population the size of a small city – fits the bill perfectly.

He says: “Iceland is the perfect environment in which to demonstrate the benefit of the new personal data ecosystem that arises when individuals own and control their own data. It has a track record of innovation, and we are confident that Iceland will be a beacon of change that will inspire others.”

Needless to say, the project won’t stop with health data. Ranger is also talking to banks about giving Icelanders access to richer financial information and maybe wearable data too.