Dementia Research and Care [electronic resource]: Can Big Data Help? / edited by Geoff Anderson and Jillian Oderkirk
Publication details: Paris : OECD Publishing, 2015.Description: 112 p. ; 21x28cmISBN:- 9789264228429

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 -- Workshop agenda -- Participants in the workshop.
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.