Persisted Patient-Centric Architecture
A radical shift from established regional or provider-centric architectures but a model that fully supports the NHS England data strategy policy to separate the data layer from the application layer.
- Aligns with the NHS England 'Data Strategy' policy to “separate the data layer”.
- Aligns with the political objective of patient-centric care, putting the patient in control of who uses their data.
- Removes complexities related to geography. It does not matter where in each country or region you receive care, the clinical systems used access your record. Your record stays with you.
- The record should be the ONLY record. Provider and consumer systems directly integrate with the record. They do not, and should not, need to persist a copy into any legacy provider-centric patient record. Removes all the complexity of persisting a copy of a record and needing to keep that in-sync with the source record.
- These technologies are not yet well understood. It will be a significant mental leap to go from provider-centric data stores to patient-centric data stores.
It will be a brave vendor who builds the first solution using patient-centric data stores at the heart. It will be a brave patient who first moves their NHS records into their own patient-centric data store. Someone has to be the first.
- How will systems ‘discover’ if a patient already has a patient-centric shared record?
Patient-centric records needs to be discoverable. Before any implementation creates a new shared record for a patient, the system needs to see if the patient already has a record. We want to avoid multiple patient-centric records being created. The solution here could be the NHS Digital National Record Locator (NRL). That could hold a pointer to every patient-centric shared record.
- The API standard(s) to give patient access, control and ownership are emerging. There is not yet a de-facto standard let alone a candidate to be a national standard.
The Solid Pod API may become the de-facto standard or there may be VHS vs Betamax / Blu-Ray vs DVD-HD battles before a standard is established for access, control and ownership of patient-centric cloud-based data stores.
- Existing providers who have made significant investment, or receive significant revenue from their data storage solutions will feel they are losing ownership and control, because they are losing ownership and control.
A provider-centric record could be turned into a patient-centric record by adding the necessary API to give the patient access, control and ownership. It does not need the record to be physically migrated to a different or special hosting platform. Technologies like Solid Pod can be hosted on any platform. What Solid Pod gives is the API. An equivalent API could be added to an existing shared record. The API standard(s) to give patient access, control and ownership are emerging. There is not yet a de-facto standard let alone a candidate to be a national standard.
- Should such records be a copy, or the single/master/primary record used by all connected clinical systems?
Should patient-centric records instead be a copy, populated from one or more regional shared records? This would need to be a two-way data feed, as some data may be added directly into the patient-centric record, e.g. from patient-facing apps. This could be a transition architecture where the patient-centric record starts as a synchronised copy, but transitions over time to become the ‘single and only’ record.
- Complex update processes when the provider system IS NOT your clinical system related to ownership and permissions.
Refer to the identical consideration above for the Persisted Copy Architecture architecture.