Citizen-centred data sharing governance and digital solutions at scale at the DHS Summit

26 November 2020

The ECHAlliance led the discussion around some  of the DigitalHealthEurope Project research and results, at the Digital Health Society Virtual Summit, on the 17 and 18th November. The Summit was organised for the second consecutive year by the Digital Health Society. The discussion focused on Citizen-centred data sharing governance and Support to demand and supply on the upscale of digital solutions for integrated health and care

Connecting digital health and data initiatives has never been more important. At the European level, the recent efforts towards the construction of a European  Health Data Space, as well as 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 focused 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. It was also a great 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 was held on the 17th, 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. The session discussed (and agreed 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 axes: transparency, information, awareness and trust. This discussion was partially built on the Consultation Paper on this topic.

The Panel was moderated by Carina Dantas, Senior International Projects Manager at ECHAlliance and counted 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 took place on the 18th November, under the theme  Boosting investments on data-driven health and care solutions, moderated by Jorge Gonzalez, Director at TicBiomed.

The Session was 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 discussed 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 also counted with the participation of several DHE partners, such as i~HD, EHTEL, SPMS, EPF and many others.

Extended reports on the outcomes of both sessions will be circulated soon, and the recordings are available on the Digital Health Society Summit website.

Re-watch now Session 1 and 2 below

Session 2

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