Digital Enlightenment Forum (DigEnlight) wants to build on its earlier work and broad network in the area to create a workshop to facilitate and coordinate European healthcare data management in a privacy-preserving and trustworthy manner.
As Europe is undergoing foundational changes in healthcare, there is a need to orient developments towards value-based, outcome-based and patient-centred care. The DigEnlight conference on Trusted Data Management in Healthcare in June 2016 highlighted how personal health data promises to revolutionise healthcare, bringing personal health data under individuals’ control for their own benefit and that of society as a whole.
The European Innovation Partnership on Active and Healthy Aging conference in December 2016 stressed the need for user-generated, data-driven economic models, citizen empowerment, and the need for organisation and change management models.
The EC has set up a Task Force early 2017 that will work across portfolios on developing concrete proposals to harness the potential of data and technology in order to deliver better health and care conditions in Europe. It will examine incentives and obstacles to achieve secure exchange of health data across the EU. Whilst a Commission Expert Panel on effective ways of investing in health underlined that disruptive innovations must also respect values of universality, equity and solidarity while delivering high quality, effective and safe health services.
The Estonian Presidency has taken several initiatives to drive forward the agenda of a ‘digital health society’, addressed by health ministers in July 2017, in a forthcoming declaration and Presidency Conference.
As a result, we see several key areas where recent work is being focused that could successfully be brought together to make progress on coordinated action for healthcare data management:
- Improving the accessibility and control of patient records and personal data protection and privacy for compliance with the new GDPR.
- Using applications and algorithms across distributed databases to ensure privacy and data protection, including issues of encryption and ‘black-box’ approaches.
- Using high performance computing for health data analytics and simulation.
- Building health data ecosystems, including cooperative data banks, company and publicly hold databases and individually kept data, and creating fair data markets and trusted, privacy protecting processing of personal health care.
- Coordination across borders in the EU, through standardisation, a pan-European data fund for health care and rules for data donorship.
It is now timely to take up the challenge to bring both public and private work together towards building an overall ecosystem for health data management that is efficient, affordable to all, of high quality, privacy protecting and trustworthy, and unlocking innovation.
DigEnlight will contribute to this goal by organising a one-day workshop on 25 October 2017 titled: “Towards a European Ecosystem for Health Care Data”, organised in Brussels.
We expect participants actively engaged in innovation for healthcare. They will come from policy, management and research and are open for multi-disciplinary debate. We want participants bringing in their expertise and knowledge for a European Health ecosystem and take ideas home for new developments in their own environments.
A provisional programme is below.
9.35 Keynote (EC DG CNECT - TBC)
10.00 GDPR and Health Care data management
Jos Dumortier (TimeLex) - Presentation and Q&A
11.00 Coffee Break
11.30 Panel – Privacy preserving processing of Health Data within EU
Effy Vayena (ETH Zürich): Ethics and Personal data
David Chadwick (Univ Kent, UK): Mobile patient access to hospital information
Wessel Kraay (Univ Leiden / TNO): Secure Data Analytics
Health Train Project (TBD)
13.30 Panel – Building a health care data ecosystem (Chair: Paul Timmers)
Sonja Marjanovic (RAND): Understanding value in Health Data Ecosystems
Speaker from industry involved in health care data management (TBD)
Ernst Hafen (ETH Zürich): MiDATA
Joan Guanyabens (SalusCoop, ES): Towards citizen governance and management of health data
Claus Nielsen (DFG Foundation): Fair Market for Personal health care data
15.00 Panel – Pan-European Coordination and Policy (Chair: Miguel Gonzalez-Sancho-Bodero, HoU EC/CNECT)
Petra Wilson (Health Connect Platform): Legal, regulatory and policy issues
Catherine Chronaki (HL7 Foundation): EC funded eStandards Project
Pan-European Data Fund (TNO, NL – TBD)
Data ownership (TBD)
16.15 Summary of discussions and Conclusions
16.45 Networking Cocktail
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