On 15 September, the European Federation of Pharmaceutical Industries and Associations (EFPIA) hosted a meeting of its Patient Think Tank, its forum for an open exchange of ideas, information and perspectives between patient organisations and industry. The meeting was chaired by Nicola Bedlington of the European Patient’s Forum.
The afternoon sessions of the Patient Think Tank were focused on the DataSavesLives initiative, the European Health Data Space and the Code of Conduct for Health Research. The DataSavesLives initiative is jointly led by EFPIA and the European Patient’s Forum (EPF), and involves a broad range of industry and patient stakeholders. Activities in 2020 and 2021 have focused on increasing public awareness of health data use and sharing, developing a range of communication tools including a new website, blog posts and twitter chats. Recently, DataSavesLives has been working on developing a toolkit for patient organisations, which will be launched during the EPF congress in October 2021.
A presentation on the European Health Data Space was delivered by Guillaume Byk (European Commission), explaining how it is being developed to facilitate better exchange and access to different types of health data. Next, Derick Mitchell of IPPOSI presented the outcomes of its Citizen’s Jury on access to health information, in which 25 citizen jurors were asked for their opinions on access to and use of health data. Key outcomes include a call for joined-up health records, access to a portal to view the information that is being shared, and protection against sharing information with employers, banks and insurers. Closing the meeting, Brendan Barnes of EFPIA presented recent work on the EFPIA GDPR code of conduct, focused on the area of clinical trials and pharmacovigilance.
https://www.efpia.eu/relationships-code/patient-organisations/efpia-patient-think-tank/
