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.

Big Data and Dementia- Resources

Big Data for Advancing Dementia Research

March 2015

Dementia is increasing in prevalence, and to date has no cure or treatment. One element in improving this situation is using and sharing data more widely to increase the power of research. Further, moving beyond established medical data into big data offers the potential to tap into routinely collected data from both within and outside the health system. In this report, we examine four exemplar data sharing initiatives to better understand data sharing practices in dementia research and recommend the next steps required to move forward, which will require addressing structural issues including aligning incentives and mindsets toward data sharing.

Addressing Dementia: The OECD Response

15 March 2015

The large and growing human and financial cost of dementia provides an imperative for policy action. It is already the second largest cause of disability for the over-70s and it costs $645bn per year globally, and ageing populations mean that these costs will grow. Our failure to tackle these issues provides a compelling illustration of some of today’s most pressing policy challenges. We need to rethink our research an innovation model, since progress on dementia has stalled and investment is just a fraction of what it is for other diseases of similar importance and profile. But even then a cure will be decades away, so we need better policies to improve the lives of people living with dementia now. Communities need to adjust to become more accommodating of people with dementia and families who provide informal care must be better supported. Formal care services and care institutions need to promote dignity and independence, while coordination of health and care services must be improved. But there is hope: if we can harness big data we may be able to address the gaps in our knowledge around treatment and care.

Dementia Research and Care - Can Big Data Help?

February 2015

What potential does “Big Data” hold for finding new approaches to discovering a cure and disease-modifying therapies and to improve social care services for the growing number of people with dementia?

Government leadership and public-private partnerships will be needed to create and sustain big data resources. Key next steps are to create national infrastructures supporting “broad and deep” data; to develop international benchmarks to compare the performance of health systems; and to develop an international pilot project to demonstrate the benefits of linking broad and deep data to dementia research and care.

Unleashing the Power of Big Data for Alzheimer's Disease and Dementia Research

March 2014

Main Points of the OECD Expert Consultation on Unlocking Global Collaboration to Accelerate Innovation for Alzheimer's Disease and Dementia. This paper reports on the opportunities offered by the informatics revolution and big data. Creating and using big data to change the future of Alzheimer’s and dementia requires careful planning and multi-stakeholder collaboration. Numerous technical, administrative, regulatory, infrastructure and financial obstacles emerge and will need to be hurdled to make this vision a reality.

To access the complete library of OECD resources on dementia, including publications and freely available working and policy papers, click here