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Sharing Linked Data for Health Research

Sharing Linked Data for Health Research

Sharing Linked Data for Health Research

Toward Better Decision Making
Carolyn Adams , Macquarie University Law School
Judy Allen , University of Western Australia, Perth
Felicity Flack , University of Western Australia, Perth
June 2022
This ISBN is for an eBook version which is distributed on our behalf by a third party.
Adobe eBook Reader
9781108631921

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    Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.

    • Provides a comprehensive review of the human rights, ethical and legal decision-making frameworks that regulate the sharing of linked data for research
    • Includes detailed recommendations for improving the regulation of research using linked data
    • Compares the practice and process in three jurisdictions — Australia, Canada, and the UK — that have well established data linkage infrastructure and programs

    Reviews & endorsements

    '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

    'I strongly recommend this excellent, comprehensive book. It's based on sound theoretical foundations and practical solutions with international relevance. It's a highly important, unique contribution to the literature and is relevant to professionals and students alike across the globe.' Kerina Jones, Professor of Population Data Science, Swansea University, Wales, UK

    'This excellent monograph explains how linked personal data can be safely used to answer important health questions. Future decisions about data sharing, requiring legal authorisation as well as independent ethical review, should be timely, transparent and based on clear and consistent criteria.' John D. Mathews, Professorial Fellow, University of Melbourne

    'Sharing Linked Data for Health Research is an outstanding academic achievement and worthy of purchase and study by all involved in data-intensive research.' Edward S. Dove, School of Law, University of Edinburgh, UK

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    Product details

    June 2022
    Adobe eBook Reader
    9781108631921
    0 pages
    This ISBN is for an eBook version which is distributed on our behalf by a third party.

    Table of Contents

    • 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.
      Authors
    • Carolyn Adams , Macquarie University Law School

      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 , University of Western Australia, Perth

      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 , University of Western Australia, Perth

      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.