Unlocking the power of Health Data

Health data management and modelling
29 June 2023

Data is at the heart of a patient-centric, preventative and digital healthcare future. However, collecting, processing and utilising these data is complex. TNO plays a central role in bringing stakeholders in public health and healthcare together to develop robust, secure and effective Health Data Ecosystems that can address these challenges and optimally use data to improve patient care.

What is a Health Data Ecosystem?

Health data can come from anywhere. From clinic and hospital records, behaviour tracked on health apps and wearables, personal reporting, environmental factors like air quality and agriculture, and more. Health Data Ecosystems – often called ‘Health Data Spaces’ – are the technical and social arrangements that underpin an environment in which health data are combined, shared, analysed and used. A Health Data Ecosystem brings stakeholders, technology, standards, systems and data together to enable all stakeholders to utilise these data in the most effective ways.

Starting with data sources

The technology already exists to develop high-quality digital tools that support disease understanding, prevention, self-management and treatment. But long before these tools can be developed, the data that powers them must be collected and managed. And collecting those data is a challenge in itself. First, the data are fragmented into a variety of silos, including the Electronic Patient Dossiers (EPDs), patients’ self-generated data, and administrative and demographic data. In addition, information that was not previously considered to be health data – like lifestyle or environmental factors – are becoming increasingly important.

Even after identifying all data sources, the challenge continues. Patients and practitioners are hesitant to share this very personal information, and are concerned about privacy. Current and future legislation create challenges to the (re-)use and sharing of these data. In this way, only a FAIR-based, privacy-by-design, secure system for data management and clear communication with patients will enable the re-use of data for targeted clinical studies and technological development.

FAIR data and the Personal Health Train

FAIR is a set of guiding principles that optimise data re-usability. The four FAIR principles describe that data are Findable, Accessible, Interoperable and Re-usable. The FAIR principles are designed to make data more accessible, understood, exchanged and reused.

But how can we secure data privacy while still developing relevant tools? The ‘Personal Health Train’ concept enables researchers to work with FAIR-based personal health data to develop algorithms without giving them access to personal information. The concept involves ‘trains’ that contain algorithms or queries that visit ‘data stations’, called FAIRpoints. Each station has rules about what a visiting train can do with the data.

FAIR guiding explained how to secure data privacy while still developing relevant tools.

Building the health data ecosystem

TNO brings together stakeholders from healthcare, BioTech, pharmaceutical, MedTech, regulatory and – importantly – patient advocacy organisations to collaborate and develop Health Data Ecosystems that address data challenges and break down the barriers. As an independent research organisation with a broad network of partners and resources, we are uniquely positioned to play an orchestrating role in these collaborations. Our broad range of knowledge and expertise enables us to contribute to discussions about the technical, legal, ethical and security challenges that must be overcome to enable robust Health Data Ecosystems that can mutually benefit from effective data analysis, deeper study and novel technology development.

What’s more, TNO works to enable secure data management within the boundaries of current legislation like GDPR, while also advising on future legislation like the European Health Data Space (EHDS) that will protect patient privacy, remain well within ethical standards and still make the most of the essential data that can improve patient health.

Leiden Institute for FAIR and Equitable Science (LIFES)

TNO, together with ten other scientific organisations, has established the international Leiden Institute for FAIR and Equitable Science (LIFES). LIFES' mission is to make research data accessible for reuse worldwide. We work to develop and maintain standards and tools to enable reuse of health data. Privacy and human interests are paramount. The organisation works according to the FAIR dta principles which stands for Findable, Accessable, Interoperable, Reusable. Read more about LIFES.

Balancing the discussion

It is only through these multi-stakeholder collaborations that true progress can be made towards novel digital methodologies and tools. Each stakeholder has an essential role to play, and yet cannot achieve strong progress on their own. By working together, we can address the complex issues and develop useable solutions.

One recent project that illustrates the impact of this work is HERACLES: a multi-stakeholder collaboration aimed at developing technology that uses AI to support the diagnosis, care and treatment of cancer patients. And the successful C4Yourself project, explained further in the pull-out box, demonstrates how bringing together social innovation, technical innovation, legislation and ethical guidance can be used to develop citizen-controlled data capture and re-use.

Addressing the challenges

From preventing bias in AI models to creating benchmarks for preventative healthcare. From developing the tools that best utilise the technology to helping to increase adoption and acceptance among users. TNO is engaged in every stage of the process. We work with stakeholders in consortia, public/private partnerships, B2B contract work, or any other collaboration that can effectively drive our digital health future forward. And we provide data management solutions that address all their needs.

Want to know how you can contribute to the Health Data Ecosystem, to more personalised healthcare and to higher-quality scientific study? Get in touch today

C4Yourself puts citizens in control

C4Yourself worked to develop a privacy-trust-by-design infrastructure for the re-use of health data related to Covid and Long Covid. Based on informed patient consent and participation and in a robust Health Data Ecosystem, C4Yourself created true citizen control over their own data, yet enabled the collection of daily health data that can lead to better insight and individual patient health, all while complying with legal and ethical standards. With a completed proof of concept, C4Yourself is ready for further development and implementation.

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