One of the biggest challenges across the whole health ecosystem is accessing data. Whether for today’s direct care or unlocking tomorrow’s healthcare innovation, timely access to data holds the key. The implications are massive, taking in everything from self-care, preventative care and early intervention to new drugs and precision medicine.
Personal data innovator digi.me is doing pioneering work in this sector, based on its wider belief that every individual should have the right to own and control all of their data and share this with others as they choose.
“By enabling individuals to have a complete copy of their data we bring about a win-win situation for individuals, healthcare providers, industry and research,” Says Dan Bayley, senior project manager at digi.me. “Everyone can benefit from better access to data when the individual owns and controls their own data.”
Digi.me works across all sectors, not just health. Founder Julian Ranger previously developed the standards and interoperability for the ‘military internet’ which is still used around the world today.
In an exciting and ambitious project, the company has been working with the Icelandic Health Department on a new approach to data-driven healthcare provision.
Iceland already had a national portal that gave
patients access to their medical records but the government was keen go beyond this and to enable a much richer ecosystem of innovation. Digi.me supported Iceland in implementing a citizen-facing API that allowed people to use their data with third party apps and services.
What emerged from this was Dattaca Labs, an initiative launched in June to innovate across not only health but also finance, retail, telecommunications and the Internet of Things. Dattaca Labs – which describes itself as a ‘living lab’ – worked in partnership with digi.me, Iceland’s Directorate of Health and local technology companies to develop the health API, making Iceland the first government in the world to give its citizens access to health data in digital form.
Digi.me is now building on the baseline health ontology that resulted from the work in Iceland, and exporting this to other health services around the World. Another of the firm’s current projects is with Amgen, a US multinational pharmaceutical company. The collaboration is about understanding the potential benefit of bringing a more comprehensive set of patient health data together for patients and hospital systems as well as enabling innovation and research.
Dan said: “One of the primary objectives here is to enable individuals to obtain their health data. Once we enable this all the other possibilities and benefits will follow and this is an important message for all health economies.”
The digi.me approach amounts to the kind of patient centricity being explored by global foresight initiative Future Agenda, as featured in this edition.
Dan explains the problems solved by allowing the patient to be the source of his or her health data: “It doesn’t matter where you are in the world, healthcare is complex, from the different specialities to the care pathways and the various systems and organisations. For example, here in England we have the National Health Service but it is made up of hundreds of organisations who all struggle to share data effectively for a variety of reasons.
“Even if this problem is solved at some regional or national level it will never be a complete picture. Populations are highly transient and patients’ data does not follow them. No amount of money or interoperability between systems will ever be able to solve this entire issue, it’s just too vast and complicated.
There is one constant in any healthcare system, a single point of integration and that is you, the individual, the patient.
“Digi.me sees the world slightly differently. There is one constant in any healthcare system, a single point of integration and that is you, the individual, the patient. If healthcare providers simply and routinely gave data back to individuals each of us would hold a single, rich and longitudinal care record which we could then then share.
“What’s more, nothing else needs to change right now. Existing systems and processes can carry on before as long as data gets back to the individual in a machine-readable format which will be required by law anyway under the incoming EU General Data Protection Regulation. The digi.me app will ingest the individual’s data whether in file format or via APIs.”
The cross-sector capability of digi.me means other datasets can feed in to provide a comprehensive picture of your health and wellbeing. For example, weekly shopping data could tell you about your household diet, your social data might reveal clues about habits and behaviours – even banking data could provide insight to day-to-day life. The app’s consent features mean a user controls the flow of data and its ‘private sharing’ capability means information can be processed on device for additional privacy.
Dan says: “Healthcare and industry can start to innovate around this rich data, providing services directly to the individual without the need to hold any data, giving individuals 100 per cent privacy. For example, you can easily imagine an app that looks at the cumulative effect of your lifestyle and provides guidance, advice and even incentives to help you be healthier.”
Health data is, understandably, a particularly sensitive area for consumers, and for good reason. The WannaCry ransomeware attack earlier this year that brought down numerous NHS systems was just one high profile example of what can go wrong.
Dan says digi.me’s security and architecture offers a unique solution: “Digi.me has three founding principles: privacy, security and interoperability and digi.me never sees, touches or holds an individual’s data. We have a very rich security architecture but, in essence, all data is doubly encrypted end to end to military standards. There are no data silos or honey pots for hackers to target. The dig.me API enforces the highest standards of security and is inert and stateless until the user gives express permission. It’s revolutionary and a world first.”
Human-centricity, then, lies at the heart of the Digi.me offering. The potential for what it can do in the health sector particularly excites Dan.
“The opportunities for healthcare and the wider health eco-system are ripe and with technology now maturing to enable what was previously impossible we are on the cusp of enabling a revolution in healthcare and we only have to do one thing, give data back to the patient.”