Sharing Linked Data for Health Research
Toward Better Decision Making

A practical guide to reform of the regulatory environment for access to government held data for research.

Carolyn Adams (Author), Judy Allen (Author), Felicity Flack (Author)

9781108426640, Cambridge University Press

Hardback, published 9 June 2022

300 pages
23.5 x 15.7 x 2.1 cm, 0.55 kg

'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

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.

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.

Subject Areas: Forensic medicine [MMQ], Medical ethics & professional conduct [MBDC], Medical & healthcare law [LNTM], Intellectual property law [LNR], Comparative law [LAM]