Medical Law Privacy and Data Protection

Sharing Linked Data for Health Research: Toward Better Decision Making

Edited by Carolyn Adams · Judy Allen · Felicity Flack
Cambridge University Press June 2022

Specifications

ISBN-13
9781108426640
Publisher
Cambridge University Press
Publication
June 2022
Format
Hardback
Jurisdiction
U.K. ? Countri(es) for reference only

Also available as

Details

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.

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
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