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Enabling Patient Centricity Health v006

Patient Centricity empowers individuals with their own data through the use of innovative technology, making them the principle stakeholder in the health eco-system. The Icelandic Directorate of Health, in partnership with, has enabled a world first national patient-centric system by enabling individuals to download a copy of their data to a secure personal library which they own and control. This can then be accessed on demand by the individual from any device.

Innovation Summary

Innovation Overview

The key objective in Iceland is to empower individuals with their data through the creation of the world’s first personal data eco-system. Once they have control and ownership of this data, they are enabled to freely share it with who they choose to catalyse innovation and research of new data-based apps and services in the health sector.

Initiatives such as the US Open Notes Programme have already shown that empowering individuals with their health data improves communication, understanding and health outcomes, but Iceland wanted to take this to the next level. The desire to make data portable and useful to individuals, as well as complying with the new GDPR regulations around personal data access and privacy, led Iceland to open up data to individuals in an electronic and reusable form through a citizen-facing API.

Uniquely individuals each have their own personal secure library to hold their data in a location they choose, a technology provided by an innovative personal data platform.

This provides individuals with the capability to own and control their data and share it with parties they choose using explicit and informed consent. Now in Iceland citizens have access to a wide variety of personal data including social media, banking, health records and wearables.

By empowering individuals with their data, Iceland has enabled healthcare and industry to start innovating around individuals with greater, consented access to rich, wide and longitudinal data, with complete transparency and control by the individual. From this an eco-system of innovators with Dattaca Labs at the heart has emerged. Dattaca Labs is leading the personal information eco-system incubating and accelerating new ideas within Iceland. As a result of its innovative approach and citizen empowerment, Iceland is set to establish itself as the world leader in the Personal Data Eco-System.

The next phase of the project is to encourage wider adoption and use of potential data-based solutions, as well as further expand the eco-system of apps and use cases. With this in mind Dattaca has raised an investment fund to stimulate innovators and are active in inviting the international community to come to Iceland and innovate.

Innovation Description

What Makes Your Project Innovative?

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 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.

What is the current status of your innovation?

As of 2017 the national health API was deployed and integrated with 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.


Innovation Development

Collaborations & Partnerships

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’s technology underpinned the project architecture and brought the personal data solution which enables individuals to securely own and control their data.

Users, Stakeholders & Beneficiaries

The innovation community has responded positively: "Enabling consumers with their data means developers can innovate and focus on solving UX and business problems. 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.

Innovation Reflections

Results, Outcomes & Impacts

  • 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.


Challenges and Failures

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., 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.

Conditions for Success

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 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.

Lessons Learned

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.

Project Pitch

Year: 2017
Level of Government: National/Federal government


  • Identifying or Discovering Problems or Opportunities - learning where and how an innovative response is needed
  • Implementation - making the innovation happen
  • Diffusing Lessons - using what was learnt to inform other projects and understanding how the innovation can be applied in other ways

Innovation provided by:


Date Published:

21 November 2017

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