Data sits at the heart of modern healthcare delivery. As governments and providers shift their focus toward prevention over treatment, the quality, availability and interoperability of patient data are of paramount importance. But across England — and the rest of the UK — patient health data is still hard to access and share between health and care organizations.
The Point of Care systems (PoC) deployed in the NHS are capable of capturing the data they need to support care delivery in the care setting they are designed for. However, even though great progress has been made towards the creation of shared care records, the NHS still has to invest huge volumes of time and money into making that data portable.
We’ve seen some great examples of what can be achieved when the NHS manages its own data agnostic of care settings — such as the Personal Demographics Service and COVID vaccination data. Projects like recent optimization and improvements to the GP2GP records transfer service — and an evolution in how patient re-registrations are handled — have demonstrated the potential of a more interoperable and accessible approach to patient data management.
The trouble is, even with strong connections built behind the scenes, the NHS is still inherently dependent on suppliers to facilitate the sharing of patient data. This dependency contributes to:
- Poor digital experiences and difficulty for patients as they move between different care providers and NHS organizations as part of their care journey.
- Poor communication between the NHS and patients, which leads to costly missed appointments and frustration for patients when it’s not clear what’s happening with their care.
- Extra work for clinicians as they battle with limited technology and systems that don’t meet today’s usability and experience expectations.
Today, suppliers own the systems that both capture data and store it across the NHS, giving them control over data access. OpenEHR has advocated for years for data to be separated from apps to avoid vendor lock-in for key data assets. To move towards that model, NHS England needs a greenfield strategy to help it meet emerging policy demands — such as the prevention agenda — that also recognizes the need for the brownfield world to coexist alongside new systems and structures.
By developing that strategy now, NHS England can seal this problem and ensure that further access dependencies aren’t placed on suppliers that currently have near monopolies over critical data sets.
This isn't about criticizing suppliers; it's about the NHS clearly defining its direction for data management, setting the right priorities — and staying committed to them.
It’s time for core health data change
These challenges aren't unique to the NHS or England. Strategists, policy makers, healthcare leaders, governments and think tanks worldwide have converged on the idea that a personal health record that’s agnostic of care setting and controlled by patients is essential to meet rising expectations and new policy ambitions.
The Tony BIair Institute identifies three key benefits of these core patient data sets:
They help accelerate prevention and early care delivery by making complete, up-to-date patient data more accessible to more clinicians and experts across the patient’s care journey.
They improve citizen engagement by giving patients more control over their own data, and ultimately, their own health journey.
They support and enable innovation by breaking down the data barriers that prevent teams from bringing innovative new concepts and services to market.
A Digital Personal Health Record (DPHR) would simultaneously support the UK government’s goals of enabling preventative care interventions, putting patients in control of their own data and shifting more care delivery away from hospitals and into primary and community care settings.
But crucially, a DPHR would also lay a foundation for the next evolutions in diagnosis, intervention and care delivery.
Core data transformation creates new opportunities
The DPHR will of course need to be built primarily to overcome the data and care delivery challenges being faced today. But, it can also be designed to support emerging needs and use cases that we know will play a pivotal role in the future of healthcare.
For example, in the coming years, AI will play a wider role in driving early diagnosis. So, DPHRs — and the systems that support them — can be structured in ways that support AI model training and prediction, enabling better, more reliable outcomes by design.
Similarly, data from wearables and remote devices is only going to become more important across our connected, self-driven healthcare journeys. So, records can be designed to easily ingest and validate that data from the moment they’re deployed.
Perhaps most importantly, DPHRs could support an open, marketplace-based digital care environment. Innovative suppliers could still provide modern systems and capabilities to NHS England, but there would be no lock-in.
Third-party apps could be made conveniently available to patients that instantly integrate into their care journeys. This would also enable other organizations — such as social care providers, the private sector, and even other government departments — to provide their own connected supporting services and securely utilize patient health records to improve the services they deliver.
What would a DPHR look like in the NHS?
What we’re talking about is a very significant evolution in how the NHS manages and shares patient data. However, by building a new world based on DPHR architecture over time alongside the current model, any disruption to organizations or clinicians’ daily workflows could be fairly lightweight.
Data could still be captured by the Point of Care systems deployed across the NHS. But instead of holding the keys to data interoperability, suppliers would be required to share data captured in real time with the DPHR through the implementation of an event architecture and a publication/subscription model.
This approach ensures minimum disruption to existing NHS infrastructure and minimizes the ripping and replacement of Point of Care systems, while still enabling a significant step change in how patients are engaged, health is monitored and care is delivered.
Break the cycle of siloed insight and supplier lock-in
The NHS stands at a unique junction in its evolutionary journey. Ahead, a major shift in care delivery best practice is pulling it towards a highly connected, integrated and interoperable future. Meanwhile, siloed systems managed by providers with too much control over data are preventing it from moving forward with confidence.
A new core data approach underpinned by DPHRs has the potential to both help the NHS break from the constraints holding it back, and propel it towards the integrated, patient-centric future of healthcare.
The world is converging around DPHRs. Patients in Austria, Luxemburg, France, Finland, New Zealand and the US are able to access their own DPHRs today, and momentum for adoption is high. It’s an opportunity the NHS simply can’t afford to delay.
You can learn more about how Thoughtworks has already helped improve data sharing across NHS England here, and find out more about our experience building national digital identities here. If you’d like to discover how we could help NHS England navigate its own DPHR journey, talk to us today.
The next article will focus on how to implement this technically with the latest distributed data architecture and tooling, to improve privacy, security and consent.