Unlocking the power of Health Data

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.

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.

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