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Strengthening Health Information Infrastructure for Health Care Quality Governance

Good Practices, New Opportunities and Data Privacy Protection Challenges

In series:OECD Health Policy Studiesview more titles

Published on May 15, 2013

book
Health data constitutes a significant resource in most OECD countries that could be used to improve population health, the quality of health care and the performance of health systems. Rising levels of chronic diseases; concerns about the quality and safety of patient care; the need to assure value for investments in health care; and the need to allocate health resources wisely; are all too important to be left without good evidence for decision making.This book, based on studies of 19 countries on the development and use of personal health data and of 25 countries on development and use of electronic health record systems, includes results showing good practices, new opportunities and data privacy protection challenges. It finds that well-intended policies to allay concerns about breaches of confidentiality and potential misuse of personal health data may be limiting data use, but that the next five years appear promising, in terms of both the number of countries that plan to implement national electronic health record systems and the number that consider it likely that data from these systems will be used for some aspects of health care quality monitoring. They also appear promising for the further use of existing personal health databases and for the linkage of multiple data sources to generate new evidence.

TABLE OF CONTENTS

Foreword
Acronyms and abbreviations
Glossary
Executive summary
Strengthening health information infrastructure matters
Taking stock of the evidence – from data use to health system improvement
National health information infrastructure
National electronic health record systems
Protection of privacy in the collection and use of personal health data
Governance of data collection, data linkages and access to data
Governance of national electronic health record systems data collection
Progress and challenges in use of personal health data
Strengthening health information infrastructure: Next steps
Annexes5 chapters available
Questionnaire on secondary use of health data
Telephone interviews on secondary use of health data
Questionnaire on electronic health record systems and the secondary use of health data
Supplementary tables
Additional information on participating countries current use of electronic medical and electronic patient records by health care providers
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POLICY BRIEF

This OECD Health Policy Brief summarises the key findings of the OECD study Strengthening Health Information Infrastructure for Health Care Quality Governance: Good Practices, New Opportunities and Data Privacy Protection Challenges. Download the OECD Health Policy Brief.

Health data constitutes a significant resource in most OECD countries that could be used to improve population health, the quality of health care and the performance of health systems. The 2010 Health Ministerial Meeting called for OECD support to strengthen national health information infrastructure to provide the evidence needed to improve health care quality and the performance of health systems.

In 2011/12, twenty-five countries participated in an OECD study to understand the extent to which countries develop and analyse personal health data and the reasons why data use may be problematic in some. Sources of personal health data include registries, administrative databases, population surveys, patient surveys and clinical records.

Findings indicate that national data infrastructure is improving across countries:

There are considerable and troubling differences across OECD countries, however, in the extent to which existing health data may be used for public benefit. These differences are related to risk management in the balancing of individual rights to privacy and collective rights to safe and effective health care and to a high-performing health system.

Laws and policies enabling privacy-respectful data use are needed to strengthen national information infrastructure. To develop international studies comparing health care quality and health system performance, actions are needed to reduce unnecessary differences in data protection practices. When reforms are proposed, however, their impact on health and health care statistics and research must be given consideration. In so doing, there can be a conscious balancing of both privacy rights and rights to health and to safe and effective health care.

A role for the OECD in the coming years is to continue to support countries in reaching the goal of strengthening health information infrastructure so that privacy-respectful uses of data for health, health care quality and health system performance monitoring and research become widespread, regular activities. This requires monitoring national progress and assisting countries in overcoming obstacles to privacy-respectful data use.

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