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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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Opportunities for businesses, foundations and stakeholders

There is a shared interest in the discovery and advancement of novel therapeutic interventions for dementia and in particular, in interventions that address disease progression. The history of drug development suggests that the approach to discovery can be either biochemically target-based or phenotypic. There are opportunities and challenges for dementia in both of these approaches. The creation of an accessible big data resource for dementia could provide a “base camp” to support a range of efforts including opportunities around disease categorisation, therapies for vascular dementia, disease modifying drugs, symptomatic therapies, and preventive and risk-modifying strategies. Bringing broad and deep data together can provide opportunities to provide a better understanding of disease categories and progression that will allow for more focused efforts around cardiovascular medicines and symptomatic treatments. Inclusion of data on exposures and risk factors will allow for preventive therapies and nonpharmaceutical approaches to risk factor modification. Better accounting of the full range costs of dementia will clarify the rate of return on new interventions and spur investment in research and discovery.

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