Sharing Linked Data for Health Research: Toward Better Decision Making

Carolyn Adams; Judy Allen; Felicity Flack

doi:10.1017/9781108675789

Sharing Linked Data for Health Research

Toward Better Decision Making

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This Book has been cited by the following publications. This list is generated based on data provided by Crossref.

Dove, Edward S. Reed-Berendt, Ruby Pareek, Manish Gray, Laura Nellums, Laura B. Guyatt, Anna L. Johns, Catherine McManus, I. Chris Woolf, Katherine Abubakar, Ibrahim Gupta, Amit Abrams, Keith R. Tobin, Martin D. Wain, Louise Carr, Sue Khunti, Kamlesh Ford, David and Free, Robert 2022. “Data makes the story come to life:” understanding the ethical and legal implications of Big Data research involving ethnic minority healthcare workers in the United Kingdom—a qualitative study. BMC Medical Ethics, Vol. 23, Issue. 1,

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Wild, Cervantée E K Rawiri, Ngauru T Taiapa, Ken and Anderson, Yvonne C 2023. In safe hands: child health data storage, linkage and consent for use. Health Promotion International, Vol. 38, Issue. 6,

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Braunack‐Mayer, Annette J. Adams, Carolyn Nettel‐Aguirre, Alberto Fabrianesi, Belinda Carolan, Lucy Beilby, Justin and Flack, Felicity 2024. Community views on the secondary use of general practice data: Findings from a mixed‐methods study. Health Expectations, Vol. 27, Issue. 1,

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Carolyn Adams, Macquarie University Law School, Judy Allen, University of Western Australia, Perth, Felicity Flack, University of Western Australia, Perth

Publisher:: Cambridge University Press
Online publication date:: June 2022
Print publication year:: 2022
Online ISBN:: 9781108675789
DOI:: https://doi.org/10.1017/9781108675789

Subjects:: Law: General Interest, Medicine: General Interest, Medico-Legal, Bioethics and Health Law, Law, Medicine, Medical Law, Ethics and forensic Medicine
Series:: Cambridge Bioethics and Law

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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.

‘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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Sharing Linked Data for Health Research

Toward Better Decision Making

This Book has been cited by the following publications. This list is generated based on data provided by Crossref.

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Contents

Sharing Linked Data for Health Research
pp i-i

Cambridge Bioethics and Law - Series page
pp ii-ii

Sharing Linked Data for Health Research - Title page
pp iii-iii

Copyright page
pp iv-iv

Epigraph
pp v-vi

Contents
pp vii-viii

Figures
pp ix-x

Tables
pp xi-xii

Foreword
pp xiii-xvi

Acknowledgements
pp xvii-xviii

Abbreviations
pp xix-xxii

Introduction
pp 1-8

Part I - Context for Decision Making
pp 9-82

1 - Research Using Linked Data
pp 11-27

2 - Individual, Collective, and Public Interests
pp 28-56

3 - Social Licence
pp 57-82

Part II - Frameworks for Decision Making
pp 83-174

4 - Human Rights
pp 85-105

5 - Research Ethics
pp 106-130

6 - Law
pp 131-174

Part III - Practice and Process of Decision Making
pp 175-240

7 - Existing Practice and Processes
pp 179-205

8 - Better Practice and Processes
pp 206-240

Glossary
pp 241-242

Index
pp 243-252

Cambridge Bioethics and Law - Series page
pp 253-256

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Sharing Linked Data for Health Research

Toward Better Decision Making

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