Sharing Linked Data for Health Research

Carolyn Adams is a Senior Lecturer in the Law School at Macquarie University. She has three decades of experience working in the fields of administrative law, human rights and privacy in senior policy positions at federal, state and territory levels in Australia, at the Australian Law Reform Commission, and in academia. She has been a member of the Macquarie University Human Research Ethics Committee (Humanities and Social Sciences) since 2015. She was a member of the Population Health Research Network (PHRN) Ethics, Privacy and Consumer Engagement Advisory Group. Judy Allen is an Honorary Fellow of the Law School at the University of Western Australia with expertise in in torts, health law, and research ethics. She has provided policy advice to the Western Australian (WA) data linkage unit, government data custodians, and the Population Health Research Network on ethics, privacy, and data sharing processes. She has extensive experience in human research ethics and has chaired the WA Department of Health Human Research Ethics Committee, a specialist committee providing ethical review of data-based research projects, and the WA Country Health Service Human Research Ethics Committee. Felicity Flack is the Manager, Policy and Client Services for Australia's national data linkage infrastructure, the Population Health Research Network. She has extensive experience in the development, coordination and operation of national data linkage systems particularly the navigation of cross-jurisdictional legislative, policy and ethical issues. She also has many years of experience in research ethics including working as a research ethics manager as well as being a member and Chair of the Sir Charles Gairdner and Osborne Park Health Care Group Human Research Ethics Committee. Felicity is a Churchill Fellow.

• Part I. Context for decision making; 1. Research using linked data; 2. Individual, collective, and public interests; 3. Social licence; Part II. Frameworks for decision making; 4. Human rights; 5. Research ethics; 6. Law; Part III. Practice and process of decision making; 7. Existing practice and processes; 8. Better practice and processes.

'This is a much-needed contribution to the international discussion of how to responsibly use linked data in health research. By covering theory and practice, ethics and law, Adams, Allen, and Flack offer more than just a well-researched academic volume: it is a playbook for researchers and regulators to optimize health data linkage to advance the public good.' Eric M. Meslin, Ph.D., FRSC, FCAHS President and CEO, Council of Canadian Academies