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The Dawn of a European Health Data Space – Challenges
Posted on July 16th, 2020 by Mark Siebert in Pharma R&D
The European data strategy aims to construct common data spaces for all, create a single EU market for data, and catalyze a dynamic data economy. In a previous post, we briefly described the essence of the envisioned heath data space and pointed at opportunities and possible starting points to transform this vision into reality.
However, several questions have also emerged in exchanges with thought leaders and collaborators. Borne from gray areas around data, systems and mechanisms for common use, these questions serve as food for thought to structure an open, cross-sector discussion.
We need to talk honestly about data quality and data bias. In our experience with AI, efforts to make data reliable, transparent and reusable go a long way in catalyzing new, machine-based data exploration. Part of that effort is to define the amount and type of bias permissible in data for a particular purpose because there are no data without bias.
Vast amounts of data on biology, chemistry and health need to be machine-readable on a massive scale. Manual curation is not an option, but in a framework that spans from big data in populations to patient-centric care – where data are personal and private by definition – how do we verify the fidelity of automated processing and build trust in the system?
Where to guide
Central guidance is essential for unified empowerment, but individuals should participate in a common data space because they understand the benefits and not just because there are safeguards against risks. Robust but flexible guidance can address seemingly insurmountable differences among sectors in the way data are generated and valued, while ensuring that abuses are not rewarded. We need to understand the interests and objectives of all parties. Only so can these spaces be truly inclusionary.
It is time for a dialogue – time to openly define the needs, interests, objectives and differences of participants in an EU health data space. We want to hear your thoughts; not only about the nature of these data spaces but also about the forum in which clinical researchers and data scientists can access unified research, literature and clinical data in one secure environment. To join the discussion, please email my colleague Xuanyan Xu at firstname.lastname@example.org.
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