Citizen-centred data sharing

The Scottish vision is that citizens will be able to access, add to and share a personalised view of their health and care information.

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The UK is placed sixth for overall digital progress in Europe but only ranks 19th when looking at the use of digital public services

The infrastructure that sits beyond a centralised health interface is recognised in Scotland’s broader strategic approach. Scotland’s Digital Future: Delivery of Public Services Action Plan 2015-2020 outlines a vision in which 'citizens readily know how to and can access personal information held about them, allowing them to confirm accuracy and to choose if they wish to create their own personal data store' and 'citizens feel confident that personal data is being shared responsibly to create better and more responsive services which meet their individual needs'.

The Scottish Government wants citizens to be able to access, add to and share a personalised view of their health and care information. This ‘portal’ would also allow individuals to communicate securely with health and care providers, book or change appointments, order repeat prescriptions and access ‘virtual clinics’.

If this can be achieved with the necessary privacy, security and consent controls, then it could offer major benefits, such as greater convenience for patients and lower running costs for the NHS.

Two models are currently being looked at. One is to have centralised data accessed through a single, closed point of entry. A second is to have a more open IT infrastructure that allows different methods to be used to access the data, that would again be stored centrally.

Although the first option is likely to be simpler, it also severely restricts citizen choice and the ability to develop more personalised services.

The Scottish Government has set an objective that by 2020 citizens will be able to use a citizen portal to access a personalised view of their health and care information.

Enhanced and presented as required to make it accessible, informative and useful to them and their carers, and where appropriate make their own contributions to the information and sharing it with the relevant health and care professional.

Learn more

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Estonia’s X-Road data exchange layer that allows all public databases to interact, saved 820 years of working time last year

We're working with the Scottish Government on the next steps towards developing the necessary IT infrastructure that could work for the second model.

This work will involve Scottish SMEs, charities and other groups with an interest in a more open, distributed and citizen-controlled model of data sharing.

Work to date

Some work has already been carried out to scope out the steps necessary for proving the concept of a national patient portal. In parallel to this, we ran a two-year development project called Next Generation Digital Records with Scottish industry, academia and the Scottish Government.

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