On 17 September, the Data Saves Lives Initiative held its first Health Data Community Meeting in Brussels. Alzheimer Europe project officer Angela Bradshaw attended the meeting. Data Saves Lives is co-funded by the European Federation of Pharmaceutical Industries and Associations (EFPIA) and EIT Health; it aims to enable patients and members of the public to participate in conversations around health data use and sharing. To facilitate this, Data Saves Lives is developing a web platform to provide understandable information on key topics around health data and data sharing. The Health Data Community (HDC) is composed of stakeholders from patient representative groups, regulatory agencies, NGOs, academia and Industry.
During the inaugural HDC meeting, the ~60 attendees were asked for their input on a pilot version of the Data Saves Lives web portal. Attendees then worked in groups to identify ‘big questions’ that could be addressed through the Data Saves Lives initiative: key issues that emerged from this session included ‘how to increase public trust in health data sharing’ and ‘how to actively engage patients and citizens in data sharing’. Finally, participants worked on co-creating Guiding Principles for responsible health data research. Together, participants identified transparency, accountability, reciprocity, integrity and inclusivity as key Guiding Principles.
