Strengthening Health Information Infrastructure for Health Care Quality Governance

Good Practices, New Opportunities and Data Privacy Protection Challenges

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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.


Protection of privacy in the collection and use of personal health data

Cross-country variation in the use of personal health data is linked to differences in risk management in the trade off between risks to individual patient privacy and risks to public health and the good governance of health systems. Informed consent has become the pillar for protecting individual’s autonomy. The requirement to obtain patient consent is often either impossible or impracticable when studies involve the linkage of national historical databases. There is significant variation across countries in granting an exemption to patient consent requirements for projects within the public interest. Among the 19 countries participating in this part of the study, ten countries report that an exemption to patient consent requirements is possible under existing law; while seven countries report that an exemption is not possible without introducing new authorising legislation. There are also concerns with compliance with the legality and appropriateness of sharing data between government authorities that either prevent data linkages (four countries) or result in lengthy and complex negotiations (four countries).This chapter discusses the OECD guiding principles for the protection and transborder flow of personal data and cross-country differences in the application of these principles found in these OECD studies, including in the conduct of data linkage activities, the sharing of data and in the development of data from electronic health records.


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