Survey results: National health data infrastructure and governance

The strengthening of health data infrastructure and governance is a policy priority of the OECD. This report presents findings from the 2019-20 OECD survey of health data development, use and governance. Health ministries and health data authorities in twenty-three countries responded to the survey. Survey results indicate variability across countries in health data use and governance and identify a small number of countries with most of the policies and practices that protect privacy and health data security and foster the development, use, accessibility and sharing of key national health datasets for research and statistical purposes that were measured. The findings from the survey provide input for further discussion on health data development in multiple areas of work, notably in the digital community. The report is organised in three parts. Part I presents the capacity of national health data systems to serve and protect the public interest including progress toward the development and use of 13 key national health datasets and patient-reported outcomes data. Part II focusses on country progress toward the implementation of national health data governance frameworks focussing on broad policy areas and challenges countries are facing in improving their health data systems and governance of health data. Part III delves into national health data custodians' governance of datasets and reports progress among countries for 10 health care datasets.