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Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A
Nicola Howe1, Thomas Chadwick2, Dorothy Newbury-Birch3
1NIHR HealthTech Research Centre in Diagnostic and Technology Evaluation, Newcastle University, Newcastle upon Tyne, NE2 4HH, UK.
Abstract:
Most research funders and journals now require researchers to make their data available for sharing. There is a growing body of literature on research participants' attitudes towards health data sharing, but less evidence regarding views of participants taking part in longitudinal studies, clinical trials or public health research.1,664 respondents from the UK (participants in longitudinal studies ALSPAC and ACONF and members of Patient and Public Involvement (PPI) groups completed a questionnaire survey exploring attitudes towards data sharing, including consent and data storage. Respondents were most concerned about privacy and data security and highlighted concerns about open access and sharing with commercial organisations.
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