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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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Benchmarking system performance in caring for dementia

Governments face the daunting public policy challenge of dealing with the large and growing burden of dementia. High quality and sustainable systems of care for dementia will require innovation and profound changes in both financing mechanisms and health and social care delivery systems. To address this challenge, international performance comparisons and practice benchmarking systems are fundamental to support sound public policy development and shared learning from policy innovations. This chapter provides a conceptual framework for performance measurement of dementia care systems that can be used to map current international performance-comparison efforts, define gaps and guide efforts to fill those gaps. The chapter suggests that the World Health Organization (WHO) and the Organisation for Economic Co-operation and Development (OECD) engage their member countries in a co-ordinated and collaborative effort to share best practices for dementia care through practice benchmarking. The chaoter concludes that performance comparisons should be systematic and supported by relevant and valid information, interpreted in context and that practice benchmarking for dementia care systems will require substantial investments including the strengthening of health information systems.

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