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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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Governing health data access and privacy: OECD experiences

Data that describes health care pathways and outcomes is a key element of the broad data needed to be part of an international strategy around big data and dementia. Effective collaboration of health ministries, justice ministries and data privacy regulators is required if the societal benefits from the use of these data are to be maximised and the privacy risks minimised. OECD conducted surveys to better understand the use and governance of these data in different countries. The surveys showed important differences across jurisdictions and identified key governance factors. The chapter concludes that governments should share best practices in data governance and norms for accrediting data processors. It highlights the importance of reviewing legal frameworks for protection of personal health information privacy, the nature of patient consent and data security risks and mechanisms to mitigate them. The paper emphasizes the need to explore mechanisms to engage the public in the discussion about benefits of these data and the commitment to data privacy and the rights of data subjects.

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