Dementia, Big Data and Open Science

Abstract

Although there is clear potential to improve science and innovation systems through big data and open science, barriers still remain with respect to data sharing efforts. How can the available massive and diverse data collections be used and shared more efficiently to boost global research and innovation and improve care? What actions are needed to facilitate open access to research data generated with public funding?

The OECD is bringing together policy makers, funding agencies and researchers to tackle the issue of open access to data, focused around developing good practice and principles on data governance. Four case studies highlight best practice and identify barriers to progress.

Following an OECD-hosted consultation with the Ontario Brain Institute (OBI), the United Kingdom Medical Research Council (MRC), and the US Alzheimer’s Association, two concrete examples of global data sharing have been created. The first, focused on providing a wealth of open-source biomedical data for the community (deep data), builds upon GAAIN, the Global Alzheimer’s Association Interactive Network, and links eleven international partners through a federated network of data resources. The capability of this network is being extended significantly through connections with the French National Alzheimer’s Database (BNA), the European Medicines Informatics Framework (EMIF), and the Canadian based Longitudinal Online Research and Imaging System (LORIS). The second focused on linking big data approaches at the population level (broad data), is a complementary collaboration between the Canadian Consortium on Neurodegeneration in Ageing and the Dementias Platform UK to share and analyse large-scale complex population-wide datasets from up to 2 million individuals, including imaging, genomics and health data.

As a result, these collaborations will enable the aggregation of an unprecedented volume of individual and population-level data, offering an open science solution to help research to more efficiently tackle Alzheimer’s disease and related disorders.