Scotland has an bold ambition to achieve an integrated approach to Health and Social Care.
Naturally the bedrock of achieving this would be the integration of the systems involved, however as the Auditor General reported a lack of these joined up systems is a primary contributor to progress not being made in achieving this goal.
Specifically in their progress report they identify:
“An inability or unwillingness to share information is slowing the pace of integration
Throughout our work we were told of examples where this was not happening in practice, because of local systems or behaviours. Examples include:
- GP practices being unwilling to share information from new service pilots with other IAs;
- IAs themselves being unwilling to share performance and good practice information with others; and difficulties in setting up data-sharing agreements between IAs and ISD.
- Different interpretations of data protection legislation are not helping with the ease with which information is being shared.
- As identifying gaps in data about community, primary care and social care services and establishing how this information will be collected. This is something we have highlighted in several of our previous reports.
- NHS and social care services are made up of many different specialties and localities, often with different IT systems, for example, systems to record X-ray results or record GP data. Many of these systems have been built up over years and commissioned separately for different purposes. Some services still rely on paper records.
This is mirrored by conclusions identified in the Technical Architecture report from Digital Health and Care Scotland:
- “Most of the organisations surveyed have integration capabilities and the social care products in use do support APIs. However, the use of these APIs was found to be fairly low and system integration was often achieved using bespoke development techniques.
- Interoperability is a key challenge for all health boards and integration is in all cases achieved using InterSystems Ensemble. The survey discovered the lack of semantic interoperability standards (such as SNOMED CT) lead to potential patient safety and clinical workflow issues due to incompatible systems being integrated together.
- Data sharing agreements are common place among the organisations surveyed with most having data sharing in place with NHS boards, other Local Authorities, government and/or police. While the agreements were in place, practically applying it had come with its challenges.
- Establishing data sharing agreements were cited as a key challenge to sharing data with other organisations.”
Audit Scotland then describe the impacts of lacking these integrated capabilities:
“Sharing of information, including both health and performance information, is a vital part of providing effective care that is integrated from the point of view of the people who use services. It is also vital in helping to anticipate or prevent need.
This disjointedness has an impact on people who need care and on the ability of health and care professionals to provide the best support that they can. For example, people with multiple and complex health and care conditions can have to explain their circumstances to many different professionals within a short space of time. This can delay people getting the help they need, waste resources and gets in the way of care provision being more responsive to people’s needs.”
The Case for a Scottish X-Road Platform
What’s most important about the Auditor General’s analysis is their primary recommendation.
First they highlight:
“Local data-sharing arrangements need to be in place so that professionals can appropriately share and protect the data they hold.”
Which sets the scene for development such as ‘Regional Data Exchanges’, like this one being pioneered in Aberdeen.
However they go on to say:
“Time and money are being spent on fixing local IT problems when national solutions should be found. Local fixes are being put in place to help overcome datasharing barriers. This includes bringing teams of staff together under one roof, so they can discuss individual cases, rather than relying on electronic systems such as internal emails to communicate.
Local areas are spending time and money implementing solutions which may continue to be incompatible in the future. There is a need for a coordinated approach to the solution, which includes the need to consider a national, single solution for Scotland.”
The huge opportunity for Scotland is to avoid the huge time and expense of reinventing the wheel because this single solution has already been developed and proven, by the world’s leading digital nation Estonia, their ‘X-Road‘ system.
As this demonstration highlights, it is a central component feature that enabled their journey to become a world leading digital state.
National Data Sharing Platform
This diagram highlights how it acts as a single information sharing platform for inter-connecting all government systems and some commercial ones where appropriate.
Helpful implementation guides include:
- Introductory overviews: Youtube video, Overview presentation, EU overview presentation.
- Best Practices: E-Government in Estonia – Best practices, Overview of legislation and governance context, Nationwide E-Estonia mindset.
- Use cases: How it enables Personalized Healthcare.
- Technical implementation: Discussion of REST / JSON X implementation of X-Road, Academic paper on pseudonymization, Examples of e-government integrations, Training for developers of X-Road interfaces.
Critically it’s not a ‘point solution’, a one-off integration between a small number of systems, as is often the case and actually just creates yet another ‘silo’. Instead it is a single, national framework for integrating all government systems so that citizens are presented with the simplicity essential to what Digital Government is ultimately trying to achieve, ie. a single, simple user interface to all of government, via one standardized identity authentication process.
This generalized platform can then be tailored for any and all Digital Government scenarios; for example this page showcases how it’s enabled an integrated Digital Health system.
“Estonia has a central national database – the health information system. General practitioners and specialist doctors can and need to upload diagnoses, analyses and test results as well as treatment decisions and prescribed medicines, etc. to this national database. In emergency situations, first responders can collect the data for an electronic first-aid card in the ambulance if the patient can be identified. This allows the first aid personnel to respond better and more appropriate to the patient’s needs.”
“The once-only principle aims at reducing the administrative burden for citizens and reusing data.”
International Data Sharing
It’s also helpful to know the potential for the approach goes just beyond internal national sharing of data, and is increasingly being used to facilitate international sharing too, such as agreements with Finland, enabling key capabilities such as Finnish e-prescriptions in Estonia, leading to the formation of the Nordic Institute for Interoperability Solutions. Other nations such as Canada are also following suit.
The Nordic Institute offers this Github repository for the X-Road software, with a supporting skills program.