Welcome to the session on Citizen-centred data sharing governance - DHS Summit, 18th November

Welcome to the session on Citizen-centred data sharing governance – DHS Summit, 18th November
Events, Horizon 2020

The ECHAlliance will be proudly showcasing and discussing some of the DigitalHealthEurope Project research and results, namely the ones produced on Citizen-centred data sharing governance and Support to demand and supply on the upscale of digital solutions for integrated health and care, at the Digital Health Society Virtual Summit, that will be held on the 17th and 18th November, under the organisation of the Digital Health Society.

Connecting digital health and data initiatives has never been more important. At the European level, the recent efforts towards the construction of a Common Health Data Space and the increasing awareness that health data use and sharing is crucial to secure a healthy and safe future for all provide a range of important subjects to discuss.

Taking stock of the progresses made so far, the Summit will focus on the acceptance criteria and technical prerequisites for societal trust in the use of health data and the most innovative citizen-controlled data sharing governance models. Last but not least, the Summit will be the opportunity to showcase pioneering regional initiatives on health data and data sharing and discuss strategies to accelerate investments in ready-to-market data-driven solutions.

The first session connected to the work of the DigitalHealthEurope Project will be held on the 17th, between 13:45 – 14:45, under the theme Citizen controlled data sharing governance.

Discussions on data sharing have multiple perspectives, interests and even biases and the only way forward is to acknowledge the tensions but search for the potential compromises that can be implemented in the short-term. It is essential to progressively improve the testing of new models, the amount of data being shared and the awareness of citizens – ultimately their trust. This session will aim to discuss (and agree on) the main next steps to be followed, concerning legal questions, societal issues and business models for successful citizen-centred data sharing models, based on 4 axis: transparency, information, awareness and trust. This discussion will be partially built on the Consultation Paper on this topic.

The Panel discussion will be moderated by Carina Dantas, Senior International Projects Manager at ECHAlliance and will count with the following panelists:

  • Birgit Morlion, mHealth Programme and Policy at European Commission, DG CNECT
  • Jaana Sinipuro, Project Director at IHAN SITRA
  • Sarah Medjek, Chair of MyData Global Board of Directors
  • Nicola Bedlington, Special Advisor at European Patients’ Forum
  • Jeroen Maas, Challenge Lead Health at Amsterdam Economic Board 

The second panel under DHE collaboration will take place on the 18th November, from 11:15 – 12:15 and titled Boosting investments on data-driven health and care solutions, moderated by Jorge Gonzalez, Director at TicBiomed.

The Session is thought to bring a broad perspective on the barriers that are preventing and delaying the adoption of person-centred digital solutions at scale, based on the lessons learnt from both the Innovation to Market (I2M) initiative raised in the frame of the European Innovation Partnership on Active and Healthy Ageing and the DigitalHealthEurope project. The following panellists will discuss the potential solutions that may accelerate investments thus, paving the way to up-scaling:

  • John Brennan, CEO of WESTBIC- Ireland
  • Gemma Estrada Bertran, Director Digital Health and Technology at Ferrer
  • Erik Vermeulen, Associate Partner at EY Health leader
  • Núria Pastor Hernández, Chief Executive Officer at humanITcare
  • Diane Whitehouse, Principal eHealth Policy Analyst at EHTEL

The Summit will count with the participation of several DHE partners, such as i~HD, EHTEL, SPMS, EPF and many others.

More than 500 attendees will be at the Digital Health Society Virtual Summit!


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