On 24 November, Alzheimer Europe hosted an online workshop as part of its 2020 Alzheimer’s Association Academy (AAA). Chaired by Angela Bradshaw of Alzheimer Europe (AE), the online workshop was entitled “Health data governance and data sharing: dementia research, patient privacy and EU policy”. The workshop included four presentations and was attended by representatives from our member organisations, pharmaceutical companies and research institutions.
Sarah Bauermeister, Senior Data Manager at Dementias Platform UK (DPUK), kicked off the workshop with a presentation entitled “Turning health data into actionable insights on dementia”, providing an inside view of how the DPUK platform allows researchers to pool and analyse multiple datasets from dementia research studies. Kristy Draper of the University of Edinburgh then provided an overview of the data sharing approach adopted by the European Prevention of Alzheimer’s Dementia (EPAD) consortium, which is making the data from over 2000 participants in the EPAD longitudinal cohort study (LCS) available for use by the AD research community. Nathan Lea of the European Institute for Innovation through Health Data addressed the topic of patient privacy, describing how the General Data Protection Regulation has been designed to facilitate data sharing for research purposes whilst providing a solid regulatory framework to ensure our rights to privacy and confidentiality are respected. Michele Calabro of the European Patients’ Forum (EPF) closed the session, outlining some of the digital health initiatives launched by the European Commission and discussing how the opinions of the EPF and the stakeholders it represents have been contributed to the development of these initiatives. This AAA session was organised as part of a data sharing project funded by Gates Ventures.
