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.



The critical and complex challenge of dementia: Why governments must use big data to respond to the challenges of dementia

Dementia is a global challenge to all levels of government in every country. Many governments have developed policy frameworks to deal with the dementia challenge and these policies deal with issues related to the care for those with dementia and their caregivers, as well as support for efforts to identify strategies for prevention and cure. Governments can play an important role in efforts to create big data resources through their regulatory and legislative roles related to privacy, data access, data standardisation, and broader economic and trade policy, through their role as a provider and funder of health and social services, and as the largest supporters of research. Governments need to be clear around the importance of big data, expand and support the organisation of data to reflect the fact that care for dementia is bigger than just health care services, and ensure that big data are used across our health, social care, and research sectors to their greatest advantage.


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