Enabling a global digital health eco-system
Published : Friday 8 February 2019
Equipping patients with the means to own and control their data they can carry it with them and share it as and when they need to ...
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For years healthcare services have struggled to ensure the right data is available in the right place at the right time, even within local health eco-systems, plagued with issues of identity, privacy, security, standards, and interoperability. If we continue to follow traditional models, it is hard to see a point where healthcare can address these challenges and enable the free flow of data.
These issues are especially true when we start to consider that individuals are increasingly mobile and healthcare services and the needs of individuals extend beyond traditional organisation silos and geographic boundaries. Patients can often end up receiving treatment across regions or even in other countries, perhaps electively or simply due to where they live, work or holidays.
In practical terms if you are a patient, healthcare provider or app developer, gaining access to data from one healthcare system is often is challenging enough, let alone if you want to access across an entire health eco-system or in multiple countries.
Top this off with the increasing proliferation of consumer data, health apps, devices, wearables, and IoT, and it is not hard to understand why many initiatives struggle to get off the ground, let alone realise patient benefits.
Despite this, the EU has a bold ambition for a single digital health market to empower citizens and build a healthier society. Within this are three fundamental principles :
- Give citizens’ secure access to their health data, also across borders - enabling citizens to access their health data across the EU;
- Enable personalised medicine through shared European data infrastructure - allowing researchers and other professionals to pool resources (data, expertise, computing processing, and storage capacities) across the EU;
- Empowerment of citizens with digital tools for user feedback and person-centred care.
Many health economies are exploring similar ideas, but the road to a single digital market will be fraught with challenges. There is a real risk the vision will not be realised given today’s strategies and worse still the benefit to patients will continue to be many years out of sight.
We need a new model
Patient Centricity is the philosophical idea of enabling patients by empowering them with their data. After all, no matter how complex a care pathway or what geographies it may span, there is always one constant and that is the patient.
By equipping patients with the means to own and control their data (and delegate these rights where necessary) they can carry it with them and share it as and when they need to. As a result, we start to remove some of the traditional challenges in particular when it comes to privacy and consent.
Traditional models require complex networks of interoperability interlaced across the healthcare ecosystems joining local systems, geographies, then country to country. This would require a vast amount of coordination and effort not to mention the infrastructure, governance and process arrangements to underpin it all and the security implications.
Patient Centricity, on the other hand, creates a one to one relationship between the patient and their healthcare providers, asking one thing of healthcare systems - make data available to the patient in an electronic format (as we are starting to see in other sectors, for example with the Google, Facebook, Microsoft, and Twitter data portability project).
As the data becomes available (as we’re seeing in countries like Iceland the US and soon the UK NHS), patients can navigate the healthcare system, aggregating their data as they go, using a “personal data library” solution to securely store and share their data.
Developers of personal data libraries are experts in interoperability and enable the individual to hoover up all their data in the form that it is made available. Data library solutions can do this without the need to worry about agreeing on the underlying mechanisms, including identity and standards, as long as these are openly published.
Similarly, data library will be able to connect to the proliferation of consumer health technology including apps, devices, IoT, wearables and similar data sources into a single location.
By empowering individuals to own and control their data, they can in turn, make this data available to apps, services and healthcare providers stepping over many of the traditional barriers to information sharing. This approach enables access to richer, wider, longitudinal data to be aggregated and made available through a single source - the individual.
Industry leaders anticipate a number of personal data library solutions to emerge over the coming years with notable examples today including Apple Health, digi.me and Solid, a Tim Berners Lee initiative.
The market is likely to dictate which of these gain traction, and while there may be a number of significant data library providers, this is still a limited and finite number compared to the 1,000’s of complex connections which would otherwise be required to achieve a connected global eco-system.
If we uphold the principles of Patient Centricity to ensure data portability, we enable patients to freely choose their data libary and move between platforms. This establishes a broad ecosystem, prevents patients from being locked into healthcare silos and walled gardens, and at the same time protects healthcare providers from vendor lock-in.
Using this open Patient Centric approach, the health eco-system will be set to capitalise on an explosion in innovation and research. By empowering individuals and building trust through transparency, we will have increased availability of data. Coupled with advances in health technology including AI, it is clear to see we are on the cusp of a new era in health and personal data.
Of course, if we continue to do the same things expecting different results, in 10 years, we will likely find ourselves having the same old conversation, toiling with issues such as identity, governance, standards, and interoperability.
If we get this right, we will be able to achieve things that were never possible before and likely faster than we thought possible.
Useful links and references
- EU: Transformation of Health and Care in the Digital Single Market
- Meet the data guardians taking on the tech giants
- Future of Patient Data - Global Report
- Internet of Me - Patient Centricity White Paper
- Google, Facebook, Microsoft, and Twitter partner for ambitious new data project