Dementia Research and Care

Can Big Data Help?

OECD countries are developing strategies to improve the quality of life of those affected by dementia and to support long-term efforts for a disease-modifying therapy or cure. The OECD jointly hosted an international workshop in Toronto with the Ontario Brain Institute (OBI) and the Institute of Health Policy, Management and Evaluation (IHPME), University of Toronto on 14-15 September 2014. The aim of the workshop was to advance international discussion of the opportunities and challenges, as well as successful strategies, for sharing and linking the massive amounts of population-based health and health care data that are routinely collected (broad data) with detailed clinical and biological data (deep data) to create an international resource for research, planning, policy development, and performance improvement. The workshop brought together leading researchers and academics, industry and non-government experts to provide new insights into the opportunities and challenges in making “broad and deep” data a reality – from funding to data standards, to data sharing, to new analytics, to protecting privacy, and to engaging with stakeholders and the public. Government leadership and public-private partnership will be needed to create and sustain big data resources, including financing for data infrastructure and incentives for data sharing.

Published on February 03, 2015


Foreword and Acknowledgments
Acronyms and abbreviations
Executive summary
Broad and deep data for dementia: Opportunities for care and cure, challenges and next steps
The critical and complex challenge of dementia: Why governments must use big data to respond to the challenges of dementia
Big data approaches to dementia: Opportunities and challenges
Opportunities for businesses, foundations and stakeholders
How we can work together on research and health big data: Strategies to ensure value and success
Governing health data access and privacy: OECD experiences
Benchmarking system performance in caring for dementia
Annexes2 chapters available
Workshop agenda
Participants in the workshop
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