Iceland is the first country to give data back to citizens through a national citizen-facing API for health records. Many other eco-systems, in particular health, focus on centralising data and building silos which individuals have little or no control over, let alone the ability to access their data on their own devices when needed, as well as re-use it when they see fit.

Iceland is changing this paradigm by opening up each individual’s data to them and enabling them to own and manage their data securely.

The national health API was deployed and integrated with digi.me in 2017. It has been independently audited and approved for use, and has active users. In parallel, a community of industry innovators has been established and seen the first ideas emerging for apps and use cases which build on this personal eco-system. The most notable of those live to date is Retina Risk, an app which helps individuals with diabetes self-manage their risk of sight-threatening diabetic retinopathy.

As of 2017 the national health API was deployed and integrated with digi.me. The solution has been independently audited and vetted and approved for use and a number of beta testers have already used the solution.

In parallel a community of industry innovators has been established and hackthons have been run with the first ideas emerging with apps and use cases being published, notably Retina Risk an app which helps individuals with Diabetes self stratify their risk of diabetic retinopathy.

The next phase of the project is to encourage wider adoption and use of the solutions and further expand the eco-system of apps and use cases.

Iceland’s national Directorate of Health was instrumental in enabling the vision for returning data to patients. TMS, the Icelandic health system developers, were responsible for making health data available via an API, while digi.me’s technology underpinned the project architecture and brought the personal data solution which enables individuals to securely own and control their data.

The innovation community has responded positively: "Enabling consumers with their data means developers can innovate and focus on solving UX and business problems. Digi.me provides an accessible plug and play platform, which takes less than a day to integrate”.
Early focus groups with Icelandic citizens have been very positive with individuals being receptive to the idea of greater access and control, and the possibilities this brings.

• We ran a beta test with 30 individuals to test the health API connection (we got 23 surveys back from this).
• We ran a focus group with 14 individuals to access their perceptions of privacy, security, etc.
• In Iceland we have now had over 10,000 downloads of the App.

One of the significant challenges has been around compliance and data protection. Iceland has some of the most stringent data protection laws in the world and required 3rd party verification at all stages for the platform to be approved for general use. Digi.me, working with key stakeholders in Iceland, was able to address all these issues to everyone’s satisfaction, primarily due to the military heritage of its founder, who specialised in interoperability in the military internet, as well as the fact is designed to be 100 per cent private and secure by design.

One of the key factors which has enabled Iceland to reach its current position is the acceptance that individuals have a right to own and control their data, and request a copy of this in an electronic and reusable format though an API. Iceland's commitment to this, in particular within healthcare, is perhaps the single biggest lesson others can take from the project so far.

GDPR legislation across Europe and being recognised more widely as the standard, requires that data be made available to individuals in an electronic format. By ensuring this data is accessible and reusable, Iceland has not only demonstrated compliance but shown how when done correctly data portability is a game changer for individuals and innovation.

Since being established in Iceland, this health data innovation is now making strides in the US healthcare market with some 140+ healthcare providers connected to the digi.me platform and allowing their users to download and collate their health data. It is also set to launch in the NHS in November 2018, while a number of other EU countries are also looking at enabling the citizen / patient centric route.

The key to enabling an innovative and open eco-system is simple. Give data back to individuals. By empowering individuals with data you enable an eco-system of innovators to flourish around individuals and remove the traditional barriers and silos which exist in the likes of healthcare.