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Book Cover
E-book
Author Adams, Carolyn, 1962- author.

Title Sharing linked data for health research : toward better decision making / Carolyn Adams, Judy Allen, Felicity Flack
Published Cambridge, United Kingdom ; New York, NY : Cambridge University Press, 2022
©2022

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Description 1 online resource (xxi, 252 pages)
Series Cambridge bioethics and law
Cambridge bioethics and law.
Contents Introduction -- Research using linked data -- Individual, collective, and public interests -- Social licence -- Human rights -- Research ethics -- Law -- Existing practice and processes -- Better practice and processes
Summary "The genesis of this project was the experience of the authors working with researchers, data custodians, ethics committees, and linkage units over the past decade or more managing access to government administrative data for research. Our individual backgrounds, experience, and expertise meant that we brought a diverse, interdisciplinary approach to the table. We started to identify the problems: we heard from researchers that there were concerns with unjustified delay and lack of access to data for research that was in the public interest; we heard from data custodians that they found the decision-making process difficult because they did not have sufficient resources or guidance; we heard from ethics committees that they found data linkage projects complex and difficult to assess; and we heard from consumer representatives that there were concerns about privacy, transparency, community awareness, and consultation"-- Provided by publisher
Bibliography Includes bibliographical references and index
Notes Print version record
Subject Medical records -- Access control -- English-speaking countries
Data protection -- Law and legislation -- English-speaking countries
Medicine -- Research -- Law and legislation -- English-speaking countries
Linked data -- Government policy -- English-speaking countries
Privacy, Right of -- English-speaking countries
Data protection -- Law and legislation
Medical records -- Access control
Medicine -- Research -- Law and legislation
Privacy, Right of
English-speaking countries
Form Electronic book
Author Allen, Judy, 1953- author.
Flack, Felicity, 1969- author.
ISBN 9781108675789
1108675786