OECD countries are increasingly concerned with having the right data infrastructure in place for producing health statistics and measuring health care quality and outcomes. This relates to information gathered through registries, administrative data, Electronic Health Records (EHRs), and other sources. It concerns data linkage between settings and levels of care, and mechanisms to generate and use timely, actionable data to support better clinical care and research.
Interest in strengthening health information systems has grown since the COVID‑19 pandemic brought into sharp focus the importance of reliable, up-to-date information for decision making.
The Recommendation on Health Data Governance was adopted by the OECD Council on 13 December 2016. The Recommendation provides a roadmap for countries who adhere to it to achieve an integrated health information system that meets the health information needs of the Digital Age. Integrated health information systems support integrated health care delivery, high health system performance and value‑based care, people centred health care services and world-class data environments for research and innovation.
All countries are encouraged to adhere to this Recommendation which provides guidance for building national governance frameworks that enable personal health data to be both protected and used towards public policy goals. The Recommendation:
Encourages the availability and use of personal health data, to the extent that this enables significant improvements in health, health care quality and performance and, thereby, the development of healthy societies while, at the same time, continuing to promote and protect the fundamental values of privacy and individual liberties;
Promotes the use of personal health data for health-related public policy objectives, while maintaining public trust and confidence that any risks to privacy and security are minimised and appropriately managed; and
Supports greater harmonisation among the health data governance frameworks of Adherents so that more countries can benefit from statistical and research uses of data in which there is a public interest, and so that more countries can participate in multi-country statistical and research projects, while protecting privacy and data security.
This report documents progress among countries adhering to this Recommendation in its implementation from 2016 to 2021. It finds that countries are still in the process of implementing the Recommendation. Particular challenges to address concern harmonising approaches to data governance and to data standards to foster cross-country research collaborations and international benchmarking; and sharing best practices and supporting mutual learning to confront new cyber security threats.