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Dementia Research and Care

Can Big Data Help?

image of Dementia Research and Care

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.

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Broad and deep data for dementia: Opportunities for care and cure, challenges and next steps

The burden of dementia on individuals, families, communities and health care systems is rising globally as world populations age. The Toronto workshop on 14-15 September 2014 identified opportunities and challenges, as well as successful strategies, of 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. While the potential benefits to dementia cure and care are great, there are significant challenges related to data quality, data sharing and access to data; the protection of privacy; public engagement; and funding and incentives. Moving forward will require active involvement of governments, the research community, the private sector and the public. Next steps could include pursuing the possibility of creating a global centre of excellence to share and promote best practices; developing metrics to compare countries’ performance over time, and conducting pilot studies to demonstrate the value of linking “broad and deep” data to discovering better therapies and improving health care services.

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