Product details:
| ISBN13: | 9781108445368 |
| ISBN10: | 1108445365 |
| Binding: | Paperback |
| No. of pages: | 277 pages |
| Size: | 229x152x15 mm |
| Weight: | 406 g |
| Language: | English |
| 696 |
Category:
Sharing Linked Data for Health Research
Toward Better Decision Making
Series:
Cambridge Bioethics and Law;
Publisher: Cambridge University Press
Date of Publication: 13 February 2025
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Short description:
A practical guide to reform of the regulatory environment for access to government held data for research.
Long description:
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
'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
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.
