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 [email protected].