Building democratic health data infrastructure: updates from the Health Democratization project

Data has become one of the most important assets in healthcare, especially in the new era of digital healthcare. Building democratic health data infrastructure through Health Democratization Project, means addressing all relevant aspects to ensure that digital healthcare has a positive impact in the provision of public health services, for instance. In this regard, this project aims to contribute to a more democratic health data infrastructure by addressing relevant aspects of its implementation.

The current explosion of mobile apps, wearables, IoT-related devices, and other gadgets used in medical care has reached unprecedented levels. More and more, healthcare services rely on data extracted not just from traditional settings (i. e. “me visiting my GP”), but also from new digital scenarios (i. e. “me checking my mHealth widgets”). Also, researchers nowadays cannot leave behind the potential of AI, Big Data and learning algorithms, paving the way for evidence-based results from the analysis of massive datasets.

But… where all this data comes from? Who owns this data? Who exploits this data, and for which purposes? Are healthcare systems ready to integrate all available data into existing healthcare infrastructure? Which mechanisms have citizens to control access, use (and re-use) or define sharing criteria? Certainly, there are many questions behind these new data-related scenarios (technical, legal, ethical, economic).

Updates from Health Democratization project

The Norwegian University of Science and Technology’s (NTNU) Department of Information Security and Communication Technology (IIK) is leading the Health Democratization project. Last March 22^nd, 2021, an ALL-HANDS meeting was held with the participation of all consortium members, in order to discuss on-going activities and future tasks. This project aims to define, implement and evaluate a democratic health data infrastructure, which is expected to incentive all parties (including individuals), to prove, negotiate, and configure their rights associated with health data. Also, it counts with the collaboration of other local entities (SINTEF Security, the Norwegian Computing Center, the Norwegian Directorate of eHealth, and Inland Hospital), as well as international partners (Maastricht University, Katholieke Universiteit Leuven, Fundació TIC Salut i Social, Tecnalia, Lynkeus, and Smart Valor.

Traditional health data infrastructures are not designed for anticipating value-driven data mobility. Back then, health data has been generated in controlled environments and processed centrally. However, data mobility across trusted boundaries is becoming a reality in the daily (digital) life of citizens.

Building democratic health data infrastructure: use case scenarios

So far, the consortium has already produced practical scenarios which may be benefited from Health Democratization’s results:

• A patient requests a smartwatch’s platform to share data with the GP in a trusted and secured way
• A patient requests her dentist to send her data to a personal health data store for a second opinion
• A patient request a health authority to prove the authenticity of the immunity passport in order to travel abroad
• An optician from a public clinic requests under the patient’s consent x-ray images from a private clinic
• A chronic patient pools in a personal data store health data collected from different monitoring devices for prevention purposes
• A research institute uses big data analytic tools based on data from a cohort of patients
• A commercial data analytics service provider collects patient-generated data from patients under their consent for developing a new drug
• Two health care providers collaborating to analysing their  aggregate joint, data while keeping ownership and control over it.

Fundació TIC Salut i Social contributes to this new paradigm in different ways. First, Fundació is designated by the Catalan Health Ministry as the Delegate on Data Protection in healthcare. Also, it brings the knowledge about other related activities in Catalonia. This is the case of the new Electronic Health Record project (HES), a unified system with different tools, databases and practical guides to achieve a more coordinated work in health.

Democratizing health (and other data) in practice

Building democratic health data infrastructure through Health Democratization entails a number of aspects to be addressed. First, a democratic data management means dealing with: data provenance, portability, risk-incentive-based smart consent, rights negotiation, smart contract management or trading for profit, among others. Second, a combination of elements like Privacy & Trust Enhancing Technologies and Decentralized Storage can be a means of putting health democratization into practice. As an example, the InterPlanetaryFileSystem (IPFS) is considered as part of the toolbox to be developed.

IFPS is a peer-to-peer hypermedia protocol designed to make the web faster, safer, and more open

Another relevant topic to discuss is GDPR. Blockchain is another technology used in the Health Democratization project. However, although this technology has already been tested for data provenance assurance, not much examples can be found about GDPR-compliancy. Some examples can be found in the POSEIDON project, like the case of Santander City. This city has implemented this technology for administrative procedures, with the support of the private company Tecnalia. Also, the EU Blockchain Observatory & Forum has published a report on Blockchain Use Cases in Healthcare. Still, there is a long road ahead for a widespread implementation of distributed technologies in healthcare.

Other examples of data democratization outside healthcare can be found in the Catalan Data Governance Model initiative (link available only in Catalan). Data governance helps democratization by different means. First, it reduces redundancy and promotes multiple uses of the same data. Second, it promotes unique entry points for citizens, making administrative procedures easier. Finally, it improves quality of data and a more collaborative approach between public administration departments.

Next steps for building democratic health data infrastructure

The above mentioned context sets an excellent opportunity for Health Democratization project to provide relevant results. First, it paves the way for the selection of technologies and methods to develop the Health Democratization platform. Second, once developed, a set of demonstrators will be defined and executed, in order to test the resulting tools in a realistic environment. Finally, evaluation and performance tests will help the consortium to evaluate the impact of such technology, as well as the benefits it can bring to a more democratic healthcare sector.

Stay tuned!