There are 300+ Electronic Health Record systems (e.g. EPIC, PACS etc) in the UK installed within individual trusts, hospitals and surgeries. These systems have poor interoperability, few standard APIs, and view data ownership as belonging to the care provider rather than the individual. The current UK EHR approach is poor for researchers because the lack of APIs and interoperability reduces research’s ability to glean discovery from the widest possible data sets. This impact on research also has a knock-on effect on diagnosis.
An alternative approach is to have the Patient owning their own medical data. This is not a new concept and has been criticised in the past for potentially allowing the hyper scalers (Google, Microsoft, Amazon, Facebook) to own patient data. There can be though a happy medium between EHR centralisation and commercial Health applications. This opportunity is provided by containerisation technologies like Docker and Containerd.
Current Fragmented Situation
The current EHR model in the UK is one of multiple deployments of bespoke non-interoperable solutions across different Trusts, Hospitals and GPs. Data often has to be manually re-entered between systems with a reliance on legacy methods of data transfer. Interoperability cannot be radically achieved in this model as the number of possible integrations becomes the Cartesian product of the number of EHR systems.
The introduction of NHS Number allows the mapping of data between EHR systems. But this form of keying without digital transformation means that the architecture is always in a request and wait approach. The receiver must request the data and await the provider to push the data. With this approach there is no way of discovering what data is available in advance or for verifying the data quality before it is received. This model also has an implicit long request time approach requested between systems. This causes waste in terms of data request times and can detrimentally impact the patient’s quality of care.
Patient Centric Model
The alternative is a patient centric model. In this approach the Trust, Hospital and GP surgery request from a ‘centralised’ (there can be multiple providers) which provides standard APIs for querying all relevant patient data. The same APIs provide a write-back mechanism. The same Read APIs can anonymise the data so that patients can choose to opt-in for research benefits.
In the Patient Centric model all of the patient’s data is held within a personal vault that can only be accessed externally by APIs at the discretion of the patient. The hospital, trust and GP surgery keep their existing EHR solutions in this model and consume the master data record from the personal data vault. The local EHR systems then write their data back to the master source.
Access control the personal data is provided by a Permissions, Grants and Attestations component. Permission to share and grants always time based and are at the discretion of the patient. Medical institutions can request data with attestations and history stored within the system. Any fraudulent authentication attempts are registered and flagged to the user. The API requests are keyed on multiple attributes including NHS Number, Citizen ID, Staff ID. Research permissions follow the same model with access requests keyed on verifiable research IDs including Institution ID and University IDs.
Structured & Un-Structured Data
Personal data can be held as a series of record ‘bundles’ in a file system format. Data is logically grouped by department definitions and can be extended for other areas such as Research, Demographics and Social Care. This data is accessed by Hospitals, Trusts & Surgeries using the APIs. These APIs provide semantically structured extensible data making use of Graph API technologies which provide the benefit of not requiring versioning.
The Graph APIs conform to the Open APII standard as expressed with the NHS UK’s Open API Architecture Policy. The APIs provide GET and POST functions for Patient and Record data. The bundle data is encapsulated within these Graph APIs.
The same Graph APIs can support anonymised Research functions for reading available research data. An academic institution would then register for this service and would be provided with a unique key for accessible data. The only accessible data would be the data permissioned by the patient which is discoverable by a final GET Research Available Data service.
Cloud & Containers
The key to this architecture is a cloud deployment of a unique ‘container’ per patient. The container represents a specific file system for each user. The technology used would be an actual Container technology like Docker of Containerd. The container would contain all of the patient data in its local file system.
With millions of containers the solution needs to optimise the computing resource according to demand. This can be achieved by bringing containers to a hydrated ready state upon demand. To ensure guaranteed data availability all containers will be automatically backed up across two physically different data centres at any one time. All transactional updates will be persisted for 6 months in case of any necessary roll-back.
Building a Patient Centric Model would require centralised funding and competitive tendering allowing for multiple providers to provide services. The total cost would be lower for a majorly improved service than the current distributed EHR model. This approach would also create an internal market of AI driven application and self-care applications that can consume from the Patient API; MyUCLH is such an example.
To recap, there is considerable GDPR, personal analytical, data accuracy, early diagnosis and research benefits from such a model. This approach is conceptually different and would transform the quality of patient data across the NHS. It is implementable on provable solutions that can be reused from industry. It provides benefits to the Patient (proper ownership of data, ability to switch, GDPR), benefit to the NHS (ability to access multiple data, better architecture than any previous data collaboration model), and benefits for Research (access to open data).