The dementia landscape project was launched by the World Dementia Council (WDC) in 2021, aiming to review international progress towards the 2025 goals identified at the 2013 G8 dementia summit. As part of this project, the WDC is hosting a series of global dialogues with members of the international dementia community, reflecting on where we have come from, where we are now, and what the next steps should be. Last month, the WDC turned its attention to data sharing in dementia research, exploring the advances that have been made - and the challenges that remain.
Attended by over 60 international experts in the field, the global dialogue on data sharing was chaired by Dr Tetsu Maruyama (CEO of the Alzheimer's Disease Data Initiative/ADDI) and Dr Lara Mangravite (President of Sage Bionetworks). The meeting was kicked off by Prof. Andrew Morris of Health Data Research UK (HDRUK), who outlined some of the ways in which HDRUK is enabling data sharing, and presented a case study of data sharing as an enabler of more effective public health responses during the pandemic. Next, our Project Officer, Angela Bradshaw, highlighted some of the key findings from our recent report entitled "Data sharing in dementia research - the EU landscape", focusing primarily on challenges and opportunities linked to the GDPR. Barriers and enablers were identified, such as improved regulatory alignment, and greater involvement of people with dementia in the design and conduct of research. Finishing the introductory presentations, Dr Suzana Pentaceska of the US National Institute on Aging (NIA) described their approach to enabling Open Science, and the way it can accelerate dementia research and drug discovery.
The three brief presentations were followed by an hour of lively discussion, moderated by Dr Maruyama, with comments from high-profile researchers, clinicians, data scientists and patient organisations and industry representatives. Key questions that emerged included how to develop technical infrastructures for data sharing - and how to incentivise communities to adopt and use them; and the need to ensure data quality and provenance, developing a community of data users to generate insights without compromising patient privacy. Upcoming global dialogues will address health systems readiness and dementia in an ageing society. A transcript of the data sharing global dialogue can be found via the link below.
