Shared care records are being held up as the foundation for integrated care by NHS England, with the latest fanfare to be heard in the government’s integration white paper. However, the profession needs a more coherent approach to the data if we are to avoid them becoming just another bucket of health data for caregivers to contend with.
The race is on to deliver shared care records across England. However in our haste to get them online, is the profession overlooking data quality, structure and standards, and therefore storing up trouble for ourselves? How can we take a different approach?
Take the NHS Operational Planning Guidance for 2022/23. This states that by March 2023, all systems within a Shared Care Record collaborative can exchange information across the whole collaborative. This implies ‘next gen’ shared records, with added interoperability services around the core records themselves. We’re in a poor state to do that, with most shared care records just being summary or aggregate records for now.
We need to rethink how we structure, store, and share this data if we are to provide a sustainable platform for integrated care.
Changing the focus for the future
Firstly, we need change our approach to storage of data. We need to look at its structure and coding using mature standards and architectures, rather than just ‘filling up the bucket’ with data.
Currently the various national bodies in charge of standards don’t have real teeth. We need to work towards a policy where conformance is non-negotiable. Central NHS bodies work need to commit to working with the industry to define the standards. Suppliers should have time to conform, so that those who get on board will be rewarded with the more lucrative regional contracts.
Secondly, data needs to be stored in open form independently of applications. And the best way to do that is a single patient-centric source of the truth, rather than data that is focussed on the episode, pathway, or condition. “Manage the patient and not the disease”.
The separation of the application and data layers, as noted in the Data Saves Lives draft policy paper, is to be welcomed. To support this, data needs to be increasingly held in centrally or regionally accessible data stores. This will support the NHS vision for a single version of the truth and would liberate data from current siloes.
We can see from the COVID-19 data store; this central repository helped to ensure that the system could make effective use of data for the benefit of patients and service users. Continuing such a move would enable innovative applications to prosper, which should be of huge interest to NHS trusts.
Thirdly, we need much more sophisticated sharing mechanisms, based around public cloud. The ‘interoperability’ built into the initial minimum viable solution (MVS1.0) of a shared care record is all about provisioning the bucket. It is not about sharing onwards.
We need to build up a range of services in the cloud to be able to do that. These can include standards-based messaging profiles (FHIR/IHE), regional orchestration (messaging), record locators, and event management engines.
OpenEHR offers promise in multiple areas
openEHR – in tandem with the messaging and patterns offered by FHIR and IHE – can address many of the issues above. It puts the power for defining data in the hands of clinical informaticians rather than messaging experts, to aid with information modelling.
openEHR also offers the promise of separating the data from the application, and separating the information model from its implementation in a data repository.
Of course, openEHR is not a COTS [customisable off the shelf] strategy. It’s evolutionary and requires a much more agile approach to funding large-scale acquisitions. However there are multiple advantages to be realised with this approach, not least rapid adaptation and a fail fast/fail cheaply ethos (that preferably isn’t required).
If we’re based around open data platforms, there’d be less urgency in rolling out shared care records. Data can be freed to move between systems without any loss of meaning. We would avoid the pitfall of just lumping stuff together for the sake of having a summary somewhere. It would avoid a lot of the problems we are heading towards.
If the profession can look to change course, then we should support people who are prepared to do things differently. Just as the oil industry has come to acknowledge and address climate change, so can health IT.
This is not going to be easy to do. The race to share data is a global challenge. But if we are to use technology and data to shape a future NHS that manages diseases to one that manages patients, we need to build around an open architecture, with our citizens at the centre.