This report published by the Organisation for Economic Co-operation and Development (OECD) explores the opportunities and challenges for sharing and linking population-based health and health care data (broad data) with detailed clinical and biological data (deep data) to create an international resource for dementia research, planning, policy development, and performance improvement.
The burden of dementia on individuals, families, communities and health care systems is rising globally as world populations age. The demand for a therapy to prevent dementia or to slow its progress is great, but traditional approaches to therapeutic discovery have not been successful. The report asserts that new approaches to sharing and linking data are needed to discover a cure or disease-modifying therapy and to improve health and social care services for the growing number of people with dementia.
The report aims to advance international discussion of 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.