Promoting data sharing in dementia research

The INCF and OECD partnered to organize the workshop "Promoting datasharing in dementia research", which was held in 20-21 September 2015 in Stockholm, Sweden.

The aim of the workshop was to bring together policy-makers, funders, and leading scientists to consider the barriers to data sharing in relation to dementia research and to begin to identify practical steps that can be taken to advance data sharing in this field.

Efficient sharing of data in the experimental and clinical neurosciences would be of huge benefit to the field. While there are examples of how key developments have been enabled through the sharing of data on a global scale in other domains, such as genomics, progress toward data sharing in neuroscience has remained slow. Some notable examples of data sharing success in neuroscience include, the Human Connectome Project and the Alzheimer’s Disease Neuroimaging Initiative.

Both funders and publishers have key roles to play in changing an academic model that currently does not favor individual researchers sharing their data. Existing practices have not kept pace with technological developments that can enable data sharing. New incentives, including dedicated funding and changes to academic credit systems, are needed to exploit these technological opportunities and promote data sharing.

Among the member countries of the INCF and OECD, research on dementia has emerged as a key priority for funding agencies. The potential benefits of large-scale data sharing in this field warrant a concerted collaborative effort. Concerns about privacy, security, and ethical issues related to the sharing of personal and clinical data are not the only (or even the predominant) reasons why research data is not more widely accessible. Previous workshops hosted by the OECD and by INCF have identified a major obstacle to the advancement of data sharing as being the lack of incentives and support for producing, organizing and sharing reusable data.

Participants at the INCF-OECD workshop on promoting datasharing in dementia research

Participants at the INCF-OECD workshop 20 - 21 September 2015

Downloads 

The program, aims and scope, and all presentations are available for download

Organizing Committee

Carthage Smith, Global Science Forum, OECD
Elettra Ronchi, Global Science Forum, OECD
Dirk Pilat, OECD
Jan Bjaalie, INCF
Sean Hill, INCF
Linda Lanyon, INCF
Mathew Abrams, INCF
Maria Carrillo, Alzheimer's Association