Package 8: Citizens
- Seeks to obtain a better understanding of citizens’ attitudes towards sharing their health data.
- Identifies ways to inform people about the use of their health data and raise awareness of the benefits that the secondary use of data offers.
Lead: French Health Data Hub (France), National Healthcare Service Center (Hungary)
Contact: Mario Jendrossek mario.jendrossek@health-data-hub.fr; László Bencze bencze.laszlo@partner.okfo.hu
Latest
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TEHDAS consultation: Citizens support the secondary use of health data when it matches their ethical values
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TEHDAS outlines key issues and considerations on data altruism
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TEHDAS consults stakeholders on data altruism
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TEHDAS consultation: people support health data use with solid safeguards
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A second life for your health data? Share your views
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Individuals favour data sharing and use if benefits are clear
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TEHDAS probes matrix of data altruism definitions
Advisory group
In this work package specialists participate in an advisory group to share their insight. These specialists include citizen and patient associations and other NGOs, academia and industry.
- b!loba, Belgium
- CPME – Standing Committee of European Doctors, Belgium/EU
- Danish Committee for Health Education, Denmark
- De Gaulle Fleurance & Associés, France
- Dental School, United Kingdom (UK)
- DIGITALEUROPE, Belgium/EU
- ECHAlliance, Portugal
- European Cancer Organisation, Belgium/EU
- European Federation of Pharmaceutical Industries and Associations (EFPIA), Belgium/EU
- EURORDIS, Belgium/EU
- France Assos Santé, France
- Ghent University, Belgium
- MWSciCom, France
- Nordic Health 2030 Movement, Denmark
- Sanofi Groupe, France
- Stelar Security Technology Law Research, Germany
- The European Institute for Innovation through Health Data (i~HD), Belgium/EU
- University of Oslo, Norway
- University of Oxford, United Kingdom (UK)
- University Paris-Saclay, France
- Wellcome, United Kingdom (UK)