New Report Identifies Key Barriers and Enablers for Data Sharing in Dementia Research

A report presented at a recent online European Parliament workshop reviewed amended European Union (EU) research policy and recommended ways to enhance data sharing in dementia research, according to News-Medical . Prepared by Alzheimer Europe, the report assesses legal and policy issues that dementia researchers have had to contend with since the 2013 launch of Horizon 2020 initiative. The study determined that more than €570 million has been spent in dementia research projects through Horizon 2020 to date, many of which involve the use of clinical data. Moreover, adoption of Open Data practices is inconsistent across sectors and EU member states, while a perceived lack of clarity and regulatory consistency between member states has limited the General Data Protection Regulation's ability to enable research data sharing. Further, scientists face technical, financial, and motivational hurdles to data sharing, with privacy loss a major issue. The report's recommendations include the development of channels for faster, secure sharing of data between sectors and member states. Also advised is improving digital literacy in the general populace, to ensure that older adults and vulnerable groups are kept in the loop. The report also urges greater participation of people with dementia in design, research, and data governance.