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Package 5: Sharing data for health

  • Develops options for governance models for the exchange and secondary use of health data between European countries, based on transparency, trust, citizen empowerment and a common good.
  •  Provides recommendations for European countries on planning national legislation to enable cross-border exchange and secondary use of health data.

Lead: Swedish eHealth Agency (Sweden), Directorate Information Policy of the Ministry of Health, Welfare and Sports (the Netherlands)
Contact: tehdas@rivm.nl

Stakeholders

In this work package stakeholders participate in an advisory group to share their insight. These stakeholders include users of health data, such as researchers, innovators and policy-makers as well as providers of health data.

  • Association Internationale de la Mutualité (AIM), Belgium/EU
  • Association of European Cancer Leagues – ECL, Belgium/EU
  • Bavarian Data Protection Commissioner, Germany
  • Biomedical Alliance in Europe, Belgium/EU
  • CPME – Standing Committee of European Doctors, Belgium/EU
  • Danish Committee for Health Education, Denmark
  • De Gaulle Fleurance & Associés, France
  • DIGITALEUROPE, Belgium/EU
  • Digitaliseringskompaniet Sverige AB / Origo programme, Sweden
  • DNV AS, Norway
  • e-Health Forum, Poland
  • Erasmus University Medical Centre, Netherlands
  • European Health Data & Evidence Network (EHDEN), Netherlands
  • European Association of Urology, Belgium/EU
  • European Cancer Organisation, Belgium/EU
  • European Coordination Committee of the Radiological, Electromedical and Healthcare IT Industry (COCIR), Belgium/EU
  • European Federation for Medical Informatics (EFMI), Switzerland
  • European Federation of Nurses Associations, Belgium/EU
  • European Federation of Pharmaceutical Industries and Associations (EFPIA), Belgium/EU
  • European Health Telematics Association (EHTEL), Belgium/EU
  • European University Hospital Alliance, Spain
  • EURORDIS, Belgium/EU
  • Helmholtz Association of German Research Centres, Germany
  • HL7 Europe, Switzerland
  • International Council of The Patient Ombudsman, Croatia
  • Latvian Biomedical Research and Study centre, Latvia
  • MedTech Europe, Belgium/EU
  • MSD / EuropaBio, Denmark
  • MyData Global, Finland
  • Nordic Health 2030 Movement
  • Romanian Society of Medical Informatics, Romania
  • SNOMED International, United Kingdom (UK)
  • The Digital Health Society, United Kingdom (UK)
  • The European Clinical Research Infrastructure Network (ECRIN), France
  • University of Edinburgh, United Kingdom (UK)
  • University of Helsinki, Finland