ELI Italian Hub Contributes Towards Workshop on E-Health Data Sharing

10.02.2022

On 10 February 2022, the ELI Italian Hub co-organised an online workshop aimed at presenting and discussing the ‘E-Health Data Sharing – Best Practices and Solutions for Data Sharing, Anonymization and Creation of a Data Lake with Health Data’ White Paper.

The first part of the event, moderated by Professor Pierluigi Perri (University of Milan), focused on the requirements that led to the drafting of the White Paper by a working group composed of different operators in the health sector.

The event was also attended by representatives of the European Data Protection Board (EDPB), the European Data Protection Supervisor, and the Italian Data Protection Authority. The European and National authorities have highlighted that it is essential to define common standards regarding the techniques of anonymisation and pseudonymisation of patients' data for research purposes. In particular, the EDPB announced that guidelines on anonymisation and pseudonymisation will be published in 2022.

The second part of the event was dedicated to a round table, moderated by Professor Massimo Durante (University of Turin).

The ‘E-Health Data Sharing’ White Paper (available here) still a draft, open to further contributions, at present. We invite interested parties to contact Data Valley to contribute, integrate and develop it further.

Speakers

  • Pierluigi Perri (University of Milan)
  • Carlo Rossi Chauvenet, Silvia Martinelli (Data Valley)
  • Paola Aurucci (University of Turin)
  • Alessandra Salluce (University of Milan)
  • Pier Giorgio Chiara (Univerity of Luxemburg)
  • Vanessa Cocca (CRCLEX)
  • Stefano Leucci (European Data Protection Supervisor)
  • Carolina Foglia (European Data Protection Board)
  • Carmine Andrea Trovato (Italian Data Protection Authority)
  • Massimo Durante (University of Turin)
  • Giorgio Presepio (San Raffaele, Hospital of Milan)
  • Daniele Panfilo (Aindo)
  • Ruggero Di Maulo, Paolo Bartoli (Cloud-R)
  • Alexandru Raileanu (AWS)
  • Stefania Mariani (Green Innovation Network)

The seminar generated a lively discussion between universities, authorities, and companies, producing insights and suggestions to be further developed.