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Towards Open Health: a new model of data sharing to unlock digital health innovation 

June 18, 2024

by James Maciver, CTO at Phlo 

Imagine if you could share your medical history with a new healthcare provider as quickly and confidently as you can currently share your bank transaction history with a loan provider or a financial planning app. Rapid; complete; secure.

This is the premise of Open Health – a structured and regulated system of patient record data sharing inspired by the Open Banking revolution. It’s a system with the potential to launch a new chapter of healthtech innovation and transform health outcomes in the UK. 

The potential of Open Health

Individuals generate huge volumes of health data throughout their lives, from GP visits to blood tests and A&E visits. However, there’s currently no unified system for accessing or sharing this data, which remains trapped in silos across different providers. Without a comprehensive view of a patient’s health, personalised care planning and accurate prediction of health outcomes is impossible.

This becomes particularly problematic when, for instance, a person experiences a complicated pregnancy. As they move between the care of different NHS departments, specialist services, private providers and community health teams, the patient’s care records and health data becomes increasingly dispersed. No one has access to a complete record of their treatment information and health data, and it’s impossible for the patient to share it with each new service they interact with. This friction and inefficiency directly impacts the quality of care that the mother and baby receive. 

What could Open Health look like?

Open Health would harness a blend of existing and new technologies, including APIs, communicating between multiple health data stores and allowing seamless information sharing. The system would give patients control over their health metrics and medical histories, so they could effortlessly share their health data between public and private providers and digital health platforms. This would unlock greater choice and control over care, and, in the near future, would allow them to adopt pioneering AI health technology before it is made available via the NHS. 

For healthcare providers and digital health companies, access to a patient’s complete medical history would lead to informed decisions, reduce unnecessary tests and fewer medical errors. Barrier-free data sharing would enhance coordination among hospitals, GPs, and specialists – streamlining referrals, reducing wait times, and optimising resource use.

Importantly, medical research would benefit from a wealth of anonymised health data, accelerating innovation and the development of new treatments, drugs and personalised medicine. Open Health would also create opportunities for startups and tech companies to innovate and develop new services in a competitive landscape – all to the benefit of patients, clinical staff and a connected healthcare sector.

Laying the groundwork for success

Trust, collaboration and robust governance are essential to achieve interoperability. But what does this mean in the case of Open Health? 

The UK government, in collaboration with the NHS and relevant regulatory bodies, would be required to develop a comprehensive policy framework for healthcare data sharing, prioritising patient privacy and data security. Central to this would be the establishment of common technology standards and investment in the necessary infrastructure, such as secure APIs and data encryption protocols. There are examples of where this is being attempted in the NHS which could be learnt from – such as the work of the openEHR organisation to develop and publish technical standards for patient data storage that enable interoperability and rapid application development. However, without coordinated enforcement of these standards, adoption will likely be slow and piecemeal. 

The UK nations, with their largely centralised health systems, are well-positioned to pioneer Open Health. Implementing a nationwide strategy for data sharing in NHS England, Scotland and Wales – and in Northern Ireland’s Health and Social Care – starting with pilot programmes in specific regions or specialties, could provide valuable insights and help refine the approach. These pilots could focus on high-impact areas like chronic disease management, where coordinated care and comprehensive data sharing are particularly critical. However, NHS system providers must showcase best practices and be held accountable for implementing new standards. Incentives for compliance and penalties for non-compliance would be necessary.

Key considerations for success

Patient trust and support would determine the success of Open Health. To win and maintain this, educating the public about the benefits of improved data sharing and the rigorous safety and privacy measures in place is essential. Demonstrating improved patient outcomes, cost savings, and innovative healthcare solutions can build momentum and support from both the public and private sectors; this would also encourage clinical teams to improve the quality and completeness of healthcare data. 

Collaboration with technology companies, especially those experienced in secure data sharing and digital health, will accelerate the development of the best solutions. Partnerships with academic and research institutions will drive innovation and ensure that the systems are grounded in the latest scientific and technological advancements. Furthermore, fostering a competitive environment where startups can thrive will lead to the development of solutions to some of the sector’s most challenging problems. 

Takeaways

By learning from the success of Open Banking and embracing the unique principles of Open Health, we can unlock new opportunities for improving patient care, driving medical research and fostering digital health innovation. The journey to Open Health requires commitment from all stakeholders, but the immense potential benefits make it a goal well worth pursuing. With investment, collaboration and political will, the UK can set a global example in creating a more connected, efficient and innovative healthcare system.

About Phlo:

Phlo is a digital-first healthcare innovator and one of the UK’s leading healthtech companies. We’re building a unique technology, pharmacy and logistics stack that’s transforming the future of healthcare access and treatment for patients across the UK.

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