By 2030, the aim is for 100% of European citizens to have access to their medical data online. Much progress has been made. But some hurdles remain.
At the 2023 EHTEL Symposium on 29 November 2023, Zoltan Lantos of Semmelweis University in Hungary laid out several new directions to be taken by European large-scale initiatives, projects, and pilots that will help advance this focus.
Three main directions to highlight include:
- Creating European platforms.
- Building the foundations of a data value chain.
- Articulating clear motivations/incentives for individuals to act as data centres.
As well as these others:
- Making health information actionable.
- Improving people’s health literacy.
- Strengthening people’s ability to act on their own health status.
- Focusing in eID/an eID wallet.
- Facilitating social innovation.
This session 2 presentation focused a great deal on data and its value.
Useful background information
Useful complementary background is provided in a 50-page White Paper written by Professor Lantos and his co-authors from SITRA and its National Initiatives Network the meta-data subgroup.
The White Paper is entitled “Navigating the Health Data Wilderness in the Dawn of the Data Age. Data Value Chain White Paper”.
Chapters are included in the report that contain on the foundations of a data age for health and care; from data to value; an explanation of the ‘humanome’ (a model of a human being that acts as a personal health profile and as a data repository); various elements underpinning data definitions and architecture; a number of limitations; and, ultimately, how to model and estimate value. Both the report’s management summary and concluding statement offer summaries and key pointers.
The work is underpinned by 2020 explorations of “The Next Era in Global Health” by the Copenhagen Institute for Futures Studies and by ideas that originated with eminent experts like Russ Ackoff.
To what else should readers be attentive? As Professor Lantos and colleagues conclude (p48) (our emboldening):
“In this White Paper, we call attention to the fact that […] data must be empowered to be our primary resource for creating health every day. This requires the development of methodologies and processes that […] map the complex, interconnected and interrelated living systems of people and their environments in a well-defined way in a multidimensional virtual data space. […] [L]ife situation-based knowledge graphs and their associated semantic networks must be used to create an information model that can form the basis for the unique pattern recognition and prediction capabilities of artificial intelligence.”
What’s in it for practitioners/”doers”
Particularly for practitioners (“doers”), there are useful example descriptions of best practice in a variety of countries. They include quite some detail on:
- Australia: An Australian Government Online Metadata Registry called METEOR (pp31-35).
- Finland: Finnish experiences of data/metadata regulation (pp 36-38).
- Hungary: A Hungarian haemotology (the study of blood-related diseases) patient registry (pp39-44).
To obtain a copy of the White Paper, visit this website.