Breaking health data siloes

  • Posted on 29.03.2019

Breaking health data siloes


Lucia Medori

Chair of the Committee on Data for Healthy Societies European Health Parliament


The digital era is rapidly reshaping the ways we perform, receive and perceive healthcare. Health data are essential ingredient to trigger the digital revolution and all its opportunities to improve the quality of care. However, the health data remained often unused and their eco-system is very much fragmented. Patients’ data are siloed in different systems, with heterogenous formats and standards, often involving a large variety of stakeholders, data quality and IT infrastructures.

Those are amongst the challenges that the European Health Parliament is addressing in its policy recommendations – to be officially launched on 2nd April. The European Health Parliament (EHP) is a multidisciplinary movement connecting and empowering young European stakeholders to provide disruptive, actionable solutions for health. Each year, its five committees develop policy recommendations for the future of European health.

Since September 2018, I have the pleasure to chair the Committee on Data for Healthy Societies and leading the drafting of its recommendations, addressed to European policymakers.

Our calls for action cover a wide spectrum of topics, from data registers to ethical guidance. From my perspective, one of the most actionable call addresses the development of a truly European Digital Health Interoperability Framework.

Why? Because we need to build a connected health eco-system that could allow patients to easily access their own data (also cross-border) while enabling physicians to provide better preventive and curative healthcare.

How? We identified 3 main elements:

1.  Broadening the scope of cross-border exchange of health data and fostering the role of the eHealth Network

Building on the EU actions on electronic health records (EHR) and the related standard formats, new datasets should be promoted by the eHealth Network for cross-border electronic exchange of patients’ data. Furthermore, I think that the role of the eHealth Network in coordinating national approaches to the use of cloud computing in healthcare systems should be enhanced.

2.  Harmonising EHR data models

Much has been done for the standardisation of health data exchanges, but the way these data are stored varies greatly across EU countries. In my opinion, promoting the harmonisation of data models for EHR (meaning the way data is structured and stored) would lead to a more competitive and unified market for EHR software and ultimately foster cross-border exchange of data.

3.  Create a Single Healthcare Identifier for professionals (perhaps the most challenging step)

All healthcare transactions found in EHRs and all ePrescriptions should be linked to a single identifier of healthcare professionals, along with their institution. I believe that this single identifier, when combined with EHRs, should help to better follow patients’ pathways by allowing to see who (which provider) provided the care at which point in time, and also by facilitating communication exchange among healthcare professionals for a particular patient. A Single Healthcare Identifier repository should be openly accessible to patients and other healthcare providers, as well as paying and regulatory bodies. The identifier should include detailed information, such as the medical specialities or the languages spoken by the provider. From my point of view, the Commission should consider how this identifier can build on existing initiatives aiming at creating healthcare professional databases (e.g. European Professional Card).

Nevertheless, before starting this process, adequate investments and incentives shall be in place. We believe policymakers shall adapt healthcare financial model to the digital age. Our payment systems are made for an analogue age, they are not yet made to reimburse data-driven solutions that help in preventing harm and avoiding hospitalisations. Healthcare systems should address data infrastructure challenges and costs, by translating digital benefits and connectiveness into value for money; while assessing which investments will do the most to save lives, reduce costs, improve quality and enhance equity.

We believe that the EU institutions have a great role to play in leading Member States in this direction and become a best practice area on data infrastructures and connectiveness. But leadership cannot stand without centralisation and coordination of healthcare policies. Europe needs an EU Commissioner fully dedicated to health to oversee all the health-related actions across DGs and address the unique challenges of health data.

This is just a taste of our Committee’s view and recommendations. Do you want to read more? Stay tuned for the publication of EHP recommendations on 2nd April.

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