JPND members are helping to move forward G7 activities in dementia research.
Making better use of data and sharing it among the research community may accelerate neurodegenerative disease research, as it offers the promise of larger and wider datasets that enable new insights from both well-established and novel sources and types of data. Furthermore, moving beyond established medical data into big data offers the potential to tap into routinely collected data from both within and outside health systems.
In December 2013, the G8 Global Dementia Summit in London identified the better use of available data, resource sharing and researcher collaboration as key priorities. With the ambition to find a cure or disease-modifying therapy by 2025, the G8 health ministers mandated the OECD to report on how big data can be used and shared more efficiently for dementia research.
The results of the OECD review on big data were recently published and presented to the G7 health ministers at the first WHO Ministerial Conference on Global Action Against Dementia in Geneva in March 2015. This case-study review provides an evaluation of existing data sharing practices in research on age-related neurodegenerative diseases. Four exemplar data sharing initiatives (ADNI, AddNeuroMed, UK Biobank and the Swedish Brain Power studies) were examined to better understand current data sharing practices in dementia research and to recommend the next steps required to move forward.
The OECD report was published under the advice of an International Advisory Group chaired by JPND Executive Board member Robin Buckle, with Philippe Amouyel (JPND Management Board Chair), Yves Joanette (JPND MB member, Canada) and Martin Rossor (Vice-Chair JPND SAB) also participating.
This follows the publication in February 2015 of an OECD compendium of current thinking in this area, bringing together a number of position papers on the use of big data in dementia research. These papers emanated from a workshop at the G7 legacy workshop in Ontario in 2014.
Finally, a wider description of this activity and the emerging big data and open science activities is described within the annual reports of both the World Dementia Council and the G7 Global Action against Dementia (GAAD), both published to coincide with the Geneva WHO Ministerial Conference.