Publications

Health Data Governance

Privacy, Monitoring and Research

In series:OECD Health Policy Studiesview more titles

Published on October 05, 2015

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All countries are investing in health data. There are however significant cross-country differences in data availability and use. Some countries stand out for their innovative practices enabling privacy-protective data use while others are falling behind with insufficient data and restrictions that limit access to and use of data, even by government itself. Countries that develop a data governance framework that enables privacy-protective data use will not only have the information needed to promote quality, efficiency and performance in their health systems, they will become a more attractive centre for medical research. After examining the current situation in OECD countries, a multi-disciplinary advisory panel of experts identified eight key data governance mechanisms to maximise benefits to patients and to societies from the collection, linkage and analysis of health data and to, at the same time, minimise risks to the privacy of patients and to the security of health data. These mechanisms include coordinated development of high-value, privacy-protective health information systems, legislation that permits privacy-protective data use, open and transparent public communication, accreditation or certification of health data processors, transparent and fair project approval processes, data de-identification and data security practices that meet legal requirements and public expectations without compromising data utility and a process to continually assess and renew the data governance framework as new data and new risks emerge.

TABLE OF CONTENTS

Foreword and acknowledgements
Executive summary
Introducing high-value, privacy-protective health information systems
High-value health data supporting health care management, policy and innovation
The legislative framework governing personal health data
Open and transparent health information systems
Concentrating and strengthening national health data processing
Fair and transparent health project approval processes
De-identifying personal health data
Health data security and management practices
The way forward for privacy-protective health information systems
Annexes3 chapters available
Health Care Quality Indicators Expert Group Advisory Panel of Experts on Health Information Infrastructure
Health Care Quality Indicators Information Infrastructure Questionnaire
HCQI Expert Interviews on Health Information Infrastructure
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