Technology teams are working hard to share data with other trusts, connect to shared care record systems in ICS, national systems and social care systems run by local authorities.
For example, North Cumbria Integrated Care NHS Foundation Trust set up an information sharing gateway and brought in an interoperability product specialist to help facilitate data sharing between primary care, secondary care and social care across Cumbria.
Organisations with trust-wide EPRs can find they need to do work to share data with other systems in the trust – or even parts of the EPR itself, despite claims from vendors that their suites of systems are fully integrated.
Interoperability – getting systems to talk to each other – is one of the biggest technology challenges in our federated health system. It's hard because, amongst other things, different parts of the health and care system work in different ways, using different ways of communicating. While interoperability can be a dense, technical subject, it is important that board members understand the basics given its importance to delivering joined up health and care. The key aspects of interoperability are:
There are well-worn methods to transfer data between healthcare systems:
- Standard file formats and languages provide a common way to represent data – in a similar way to how a PDF file can be opened on any computer.
- Messaging standards exist to give systems the context they need to interpret the data and send it to the right place – a bit like a letter with a subject line and to/from addresses.
- Transport mechanisms act as tunnels to send data from one system to another. These are sometimes known as integration or interface engines.
However, interoperability is not a pure technical challenge. If anything, technical interoperability is the easy bit. Even if there is a way for systems to talk to each other, they may still be talking different languages. The big challenge is that there is no universal way of modelling medical information, and different systems use different standards.
This is a hard problem: medicine is a dense, ever-evolving field with different perspectives. And it is equally difficult in the care sector where there are even fewer technical standards. Full interoperability requires a standardised way of modelling information about the human body, everything that can go wrong with it, how it can be treated and what care can be delivered across the entire health and care system. This requires both technical and clinical expertise.
Terminology and coding (also known as semantic)
Even once there is consensus about how clinical information should be modelled, there can still be a gap in terminologies and classifications. If one system uses the term "tuberculous meningitis" and another uses "meningitis tuberculous", interoperability requires a way of translating this. Coding standards like SNOMED-CT, the Dictionary of medicines and devices (dm+d) and structures recommended by the Profession Records Standards Body (PRSB) aim to overcome this issue, but adoption is not universal.
Another practical challenge is data quality: missing, wrongly coded and incomplete data is commonplace, especially when data originates from older systems. Some clinical information is stored as free text without any structure or coding, which is difficult for systems to interpret. Part of the challenge here is getting data input in the correct way without slowing down staff. If looking up correct coding slows staff down, they're more likely to look for shortcuts. There’s a design challenge here, making sure systems are designed in a way that balances the need for good quality data with a good user experience. Cleaning it up once it is in the system is expensive, so it's worthwhile investing upstream.
Some software vendors see interoperability as a commercial threat, they think that the easier it is to get data in and out of their systems, the less locked in you are as a customer. These vendors may claim interoperability in theory, but in practice they make sharing data extremely difficult by adopting standards slowly (if at all). Other vendors treat interoperability as a revenue stream, charging both customers and third parties a premium to integrate with their systems. In the US, there is now federal legislation preventing these kind of vendor practices – termed information blocking.
Legal and ethical barriers
Even if data can be shared between systems, this doesn't mean that it always should be. The controversies surrounding care.data and General Practice Data for Planning and Research (GPDPR) demonstrate the need for trusts and their partners to think carefully about how they share data, consult with patients and service users and understand their responsibilities under UK General Data Protection Regulation (GDPR). NHS leaders and trusts can sign up to the Ethics Charter for public services.
There is of course a coordinating role for the national bodies here too. NHSX has suggested that integrated care systems will drive an 'interoperable by default' approach. And they've set out their five key priorities for interoperability, essentially focused on the development of national standards:
- A new end-to-end process and governance model for standards development, that are co-developed with key users and relevant communities.
- Developing a standards and interoperability strategy.
- Releasing an open source playbook, providing tangible guidance and advice to providers and commissioners looking to adopt and implement open source solutions.
- Long term roadmap for standards and interoperability, setting out a pipeline for new standards and priorities for the implementation of existing standards.
- Develop a standards portal that will include a registry of standards used across health and care, providing clarity on which standards are applicable, to enable trusts to search for and easily locate the artefacts needed for implementing a standard.
Key considerations for boards
- Interoperability is a means, not an end: Given the complexity of interoperability, it’s easy to lose sight of outcomes. Interoperability can improve clinical safety, enable joinedup care and make it easier for health and care professionals to do their jobs. These goals – not technology – should drive decision making.
- What will make a tangible impact in the near term? Interoperability is a complex topic, and projects can take a long time to deliver. It is best to focus on specific use cases and deliver some tangible improvements, rather than waiting for perfection.
- Do systems actually have to talk to each other? While having systems share data in a way that can be accurately interpreted and stored in other systems is often the most desirable solution, it's also usually the most difficult and expensive. If the goal is to enable staff to access information held in different places, there may be other ways to achieve this – like linking from one system to another – in a much faster and cheaper way.