All countries share common goals to improve the health of their populations and to improve quality in health care. Rising levels of chronic disease and multi-morbidity; concerns about the quality and safety of patient care; the need to measure and assure value for money for investments in health; and the need to allocate health system resources wisely are all too important to leave without good information for decision making.

Health data constitutes a significant resource in most OECD countries and it makes economic and ethical sense to use this data as much as possible: to improve population health and to improve the effectiveness, safety and patient-centeredness of health care systems. Rising levels of chronic disease and multi-morbidity; concerns about the quality and safety of patient care; the need to measure and assure value for money for investments in health; and the need to allocate health system resources wisely are all too important to leave without good evidence for decision making. Understanding the progress of the health of populations and understanding the performance and quality of health care systems requires the ability to monitor the same individuals over time, as they experience health care events, receive treatments, experience improvements or deteriorations in their health and live or die.

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. Well-intended policies to allay concerns about breaches of confidentiality and potential misuse of personal health data may be limiting data use. In 2010, Health Ministers called for OECD support to strengthen health information infrastructure.In 2011/12, 19 countries participated in an OECD study to better understand the extent to which countries develop and use personal health data and the reasons why data use may be problematic in some. In 2011/12, 25 countries participated in a related OECD study to describe the development and use of personal health data from electronic health record systems, including barriers and facilitators. This chapter describes why the privacy respectful use of personal health data is so important to strengthen information infrastructure for monitoring and research to improve health, health care quality and health system performance. It provides an overview of the issues to be examined in the next chapters of this report, as well as background information about how the studies were conducted.

Many countries are benefiting from the linkage and analysis of personal health data to provide the evidence needed for health policy decisions to improve the quality and efficiency of health care. Examples range from reporting on the cost-effectiveness and clinical appropriateness of care in Finland, Korea and Singapore; to assessments of the quality and efficiency of clinical guidelines in Sweden; to evaluating the safety of patient screening in Germany; to evaluating the quality of surgical outcomes in Israel and the United Kingdom; to examining care transitions in Australia and Canada.This chapter summarises 29 within-country projects and 10 multi-country projects deemed by country respondents to be policy relevant and to exemplify good practices in data protection. Among them, 14 study leaders were interviewed to provide additional information about their project and its relevance to health policy, as well as the steps taken to ensure privacy-respectful data use. For these 14 projects, a detailed case study summary is presented.

National information infrastructure appears strong with all 19 countries reporting national hospital in-patient, mortality, health survey and population data and all countries reporting using some data to regularly monitor health care quality. Further, all report having legislation that speaks to the protection of the privacy of personal information. Following patients through the care pathway, and from one database to another, requires patient identifying information. More than one-half of countries report that their national personal health databases do contain unique patient identifying numbers. Countries are divided, however, with about one-half engaged regularly in data linkage studies to monitor health care quality. This chapter presents the findings of the 2011/12 OECD study of 19 countries regarding the availability of personal health databases at the national level, the sharing of data across national public authorities, national infrastructure for data linkages and analysis, regional and health care network infrastructure for data linkages, and regular uses of linked data for national health and health care monitoring and research.

Countries are moving forward to develop databases from electronic health records for monitoring and research. Twenty-two of twenty-five countries report a national plan or policy to implement electronic health records and 20 report starting its implementation. Eighteen national plans include the secondary use of the data. Thirteen countries are using data from electronic record systems to monitor public health, eleven countries to conduct health research and nine countries to monitor patient safety. Barriers to creating and analysing databases from electronic health records reported by countries include concerns with current legislative frameworks, particularly as they apply to data privacy protection (16 countries); problems with the quality of data within EHRs (14 countries); and resource constraints to database creation (nine countries) and to the de-identification of data to protect privacy (seven countries). Data quality concerns include a lack of clinical terminology standards; improper coding; missing data; and variable quality across health care providers.This chapter reports findings from the 2011/12 OECD study of 25 countries regarding current uses of electronic records in physician offices and hospitals; national plans to implement electronic health record systems; implementation of national systems; the development of minimum datasets; the use of structure and terminology standards to code data; the status and technical challenges of database creation from electronic health records; and current uses of data from electronic health records including public health, patient safety and health system performance monitoring.

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.

Eighteen of nineteen countries reported that there are multiple authorities in custody of key national databases for population health and health care monitoring and research. Data custodians in all countries reported significant efforts to protect data. Nonetheless there is variation across data custodians in challenging areas of data security including practices to de-identify data to protect patient privacy so that the data can be used for monitoring and research; and provision of safe mechanisms so that researchers from other government ministries or from academia could access and use data. Some custodians manage risk by refusing data access while others would consider providing access to identifiable patient-level data. Several data custodians noted that fulfilling all the responsibilities associated with data protection is expensive and there are cost pressures. A few countries provide interesting examples of centralising the difficult tasks of linking data, de-identifying data and approving and supervising access to data that have the potential to standardise practices and be more efficient. The sharing of person-level data across borders for international comparisons is rarely reported and there were few examples of data linkages for multi-country comparative studies.This chapter presents country experiences in the de-identification of data to protect the privacy of individuals; the development of secure facilities for access to data with high re-identification risk; project approval processes for data linkage projects; data security within public authorities holding data and when public authorities provide data to external researchers; and governance of multi-country studies involving personal health data.

The creation and analysis of national databases from electronic health records to improve the safety and efficiency of health care requires strong governance of the national electronic health record system. Of the 25 countries participating in this part of the study, one-half have a national body that is responsible for EHR infrastructure development and for setting national standards for both the clinical terminology used within the records and the interoperability, or sharing, of records. Five countries have introduced or are planning to introduce legislation requiring health care providers to implement electronic health records that conform to national standards. Seven countries reported a certification process for software vendors to comply with national standards for clinical terminology and interoperability. Eleven countries report incentives or penalties to encourage health care providers to adopt electronic health record systems conforming to national standards; and to use their EHR system and keep records up-to-date. Six countries reported auditing EHR records for the quality of the clinical information. Seven countries reported engaging third parties to centralise one or more of the following tasks: building databases from electronic health records; de-identifying data to protect privacy; and granting access to data.This chapter explores results of the OECD study of 25 countries regarding the development of national bodies to oversee national EHR implementations; the use of legal requirements to adopt EHRs or adhere to standards; the use of incentives and penalties to encourage quality in the use of EHRs; concerns with data quality and the use of data quality auditing; and the engagement of third parties to assist with building databases, de-identifying data and approving applications for data access.

There is optimism among most study respondents that national health information infrastructure is growing stronger and more capable of supporting health and health care monitoring and research. The technical capacity to undertake data linkage studies is growing and there is optimism about the potential for data from electronic health record systems to be used for health care quality monitoring. Respondents from six countries, however, indicated that it has become harder to use personal health data to monitor health and health care quality over the past five years. Respondents from five countries indicated that it is unlikely or impossible that any data from electronic health record systems will be used for national health care quality monitoring over the next five years. A particular worry across countries today is that legislative reforms that are on the horizon, or that may be stimulated due to the implementation of electronic health record systems, may turn back the clock on the progress that has been made in enabling data linkages and providing access to linked data for research. A second worry is that the quality of data within electronic health records presents a barrier to the creation of national databases. Resource limitations, and not meeting expectations of timeliness, are worries among bodies that approve project proposals and among bodies that conduct data linkages on behalf of others. This chapter presents overall views of the participants to the OECD study of the secondary use of personal health data followed by views about the future use of data from EHR systems from participants to the OECD study on electronic health record system development.

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 of countries that consider it likely that the 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 sources of data to generate new evidence to improve population health, health care quality and the performance of the health system. Nonetheless, there are considerable and troubling differences across OECD countries in the extent to which existing health data may be used for public benefit. 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. This chapter summarises the results of the 2011/12 OECD studies of the development and use of personal health data and the development and use of data from electronic health record systems, and makes recommendations for international actions.