In just a few years, conversations around the importance of data in healthcare have changed dramatically. We understand that accessible quality data is paramount to improving health and care. Still, it took a pandemic to cause a market shift, and providers are finally starting to think about data first and applications second.
We are seeing more and more procurements where the data formats are not left to the vendors. Instead, tenders are requesting solutions based on open, published, vendor-neutral data standards. Examples include national systems like Slovenia, Malta, Scotland, Finland, Wales, and recently Catalunya, and top institutions like Heidelberg, The Christie, and Karolinska.
We are also seeing healthcare systems evolving, focusing on a more holistic approach to care. This involves bringing care closer to the citizen and coordinating care activities between different providers. The future of health and care does not revolve around provider organisations, but around the citizen. At the centre of that is a longitudinal care record providing a single source of truth.
For the past 25 years, we have been trying to make data follow the patient as they navigate the healthcare system. Data is captured in a myriad of systems within care providers, then some of it is sent to a shared care record, usually at the group, city, region, or national level. In most cases, this has not worked well due to many legal, technical, and, above all, business barriers, like information blocking. But even if we would overcome these obstacles and manage to get all relevant data into a shared care record, as evidence shows, most of the data from different EHRs does not have a common understanding. According to a recent JAMIA study of EHR interoperability, 68% of data was ‘understood’ when exchanged across different sites using the same vendor, but only 22% was ‘understood’ when exchanged across different EHR vendors.
If you have been in the healthcare interoperability space for a while, this comes as no surprise. As standardising data formats and terminologies across a healthcare system is incredibly difficult, we make do with what we can get – usually administrative data, documents, and some structured critical clinical data like allergies, vaccinations, and e-prescriptions at best. Introducing new document types and data to share across a health system means upgrading all participating systems, which often takes years. Difficulties in sharing a richer data set will present a major roadblock to improving care coordination among providers, an essential requirement for new models of care.
Shared care record as a single source of truth
Recognising this, some regions are starting to take a different approach. Instead of capturing data locally and then sharing some of it centrally, they begin with a shared care record, build applications on top, and then push the applications out to the providers in the region. To ensure ease of use, centrally managed components are embedded within provider systems using contextual launch and single-sign-on. Alternatively, a centrally managed portal is used in low-acuity environments like care homes, where providers often lack adequate systems. This approach automatically creates a patient-centric care record, simplifies governance of data formats and terminologies, and speeds up application distribution and updates immensely.
Health systems like Moscow City and Catalan Health Services already support primary care with centralised (private) cloud-based applications running on top of a shared care record. They can ensure consistency of data and application functionality as well as quick upgrade cycles while reducing duplication and cost. While this is the most efficient model, it is not an option in many regions or countries. What we are seeing, however, is this approach being used to coordinate care for specific population subgroups, usually for managing a chronic disease.
I first came across this idea more than ten years ago when I was introduced to Portavita in the Netherlands. They had developed a solution to coordinate care around anticoagulation. It is a centralised, national system where primary and secondary care applications embed Portavita forms into their clinical front-ends. Alternatively, clinicians could use the Portavita portal. Patients are given access as well. This enabled everyone involved in the care process, including the patient, to be on the same page by accessing the same data. The system has expanded to other chronic diseases like diabetes and COPD.
More recently, several projects in the NHS are following the same example:
- Somerset Integrated Care System is building a Single Active Medication List across the region to provide a Regional Medications Platform that will consolidate the medication information from different care settings into a single coherent patient record. The same solution is also being adopted by Lancashire and South Cumbria Integrated Care System.
- Suffolk and North East Essex (SNEE) Integrated Care System (ICS) is deploying an Advanced Care Planningsolution based on a vendor-neutral digital health platform. According to Suffolk and North East Essex ICS, “the platform gives real-time access to a single set of information focused on specific health and care needs to patients with life-limiting conditions, their families, carers, and support services. It places the person at the centre of their care plan”.
- OneLondon, consisting of five Integrated Care Systems (40 trusts and 1,400 general practices), serving the city of London, procured a Dynamic Care Planning platform. As OneLondon CTO Gary McAllister explains, “the pathways tend to span across ICSs in London, so having a single patient record that can be shared between agencies has a real benefit, especially when we talk about flows of documentation between the services”.
In conclusion, as current approaches to interoperability provide lacklustre results, we need to rethink the architecture of health IT. Today providers capture health data in various systems using proprietary data formats, sending some data to regional shared care records. New architectures have a vendor-neutral data layer at the centre and low code tools to accelerate delivery by pushing application functionality to provider systems. This facilitates care coordination and provides a single source of truth, keeping everyone on the same page, including the patient. After all, care records should serve the patient and provider organisations. In that order.
