‘Personal Data Ecosystem’ key foundation for Scotland’s Digital Economy

The backbone of Scotland’s digital economy will be a central interconnecting technology for linking all citizens to all applications, from tax returns through healthcare records.

In Scotland there is clearly documented need for such a system, with huge economic benefits also to be gained from its implementation.

The Scottish Council for Development and Industry identified that:

“The Scottish Government must invest in data, digital and technology in health and social care to help Scotland recover from Covid-19.

Closing the data gap in the sector could be worth £800m a year and deliver savings of £5.4bn to NHS Scotland. SCD said better data would help to build resilience against future public health challenges, which in turn will drive a healthy economy.”

The report identifies what it calls ‘Scotland’s Data Gap’ – the gap between ‘the health & social care data we collect, utilise or share today and the health & social care data we need and could collect, utilise or share in the future’ to better design and deliver care and services. It says that trust and transparency is key.

Health & social care data needs to be ethical, secure and anonymised as far as possible with robust governance arrangements for use and sharing.

Similarly for their report Dialogues about Data, Nesta and the Scottish Government embarked on a year-long dialogue with Scottish citizens to understand their opinions and ideas for the use and sharing of health and care data and to explore possible futures that improve outcomes for everyone.

“Pre-COVID-19, public trust in the use of personal data was at an all-time low in the wake of scandals such as Cambridge Analytica. As more complex and personal data is held about us digitally, including genomic and biometric data, it’s becoming ever more important to build public trust around how data is used, both at an individual and population health level, now and in the future.”

Web 3.0 – A New Paradigm

As was reported a year ago Scotland’s Healthcare systems are in a state of ‘guddle’ – Lacking strategic direction and suffering from a situation of disjointed IT as the root issue holding up Integrated Health and Social Care in Scotland.

The cause of this is the predilection of governments for organizing themselves via very rigid hierarchical departmental structures, from which flows equally rigid, departmental-centric IT systems, creating ‘silos’, islands of information that must then be connected to other islands to facilitate the end-to-end processes that span across all of them.

The best way to tackle this situation is not to create these islands in the first place, to instead design and build a holistic, single data environment. The most effective example of this is the Internet, and it will be it’s ongoing evolution to ‘Web 3.0’ that will create a ‘rising tide that floats all boats’ universal solution to the problem that Scotland can harness.

This is defined primarily through the emergence of a decentralized approach to applications and data. Patient records won’t be held centrally in a monolith EHR, but will instead be distributed to and owned/controlled by the users themselves.

Personal Data Ecosystems

Watch the Digital Scotland webinar replay with Julian Ranger of Digi.me to learn about the concept of ‘Personal Data Ecosystems’ and how they might be implemented in Scotland.

Digi.me offer an personal data solutions platform, that can be used for any permutation of scenarios, such as testing and managing Covid-19 risk.

Apps like Healthy Me from digi.me are an example of this new paradigm and how the decentralized approach tackles issues common to IT, like data privacy, by distributing the workload and privacy control to the users themselves.

Initiatives like MyData, of which digi.me plays a key role, are setting out to develop the global movement that will establish the framework for adoption of this approach, defining the methods and governance for regulating this model of data exchange.

As FutureScot reports at a recent parliamentary hearing on Scottish digital healthcare this approach was called for:

“What we should be aiming for it a central digitised record that the patient has ownership of. And I think any of the professions that are arguing for increased access to records, increased ability to write into records, we need to be mindful that we need to take patients with us on that journey and consent is absolutely essential.”

Scotland’s opportunity is that while these approaches seem futuristic, through vendors like Digi.me they are implementable today.

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