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.