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Engaging Citizens in Questions of Health and Data Privacy

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OFBW31 - Engaging People in Data Privacy


Malcolm Oswald PhD is Director of social enterprise Citizens Juries c.i.c., and an Honorary Research Fellow in Law at the University of Manchester. He has worked for many years on information governance in the NHS , including developing NHS guidance on anonymisation.
He will talk about two citizens’ juries designed and run by the University of Manchester, and the significance of these for public policy. The juries explored questions about whether health data derived from patient records should be used for purposes such as research and clinical audit, but also more contentious uses of such data by commercial organisations e.g. for new drug discovery.  Each jury brought together a cross-section of citizens, 18 in each jury, to hear evidence from expert witnesses. An independent oversight panel monitored for bias. The juries deliberated together over 3 days, to reach conclusions about the questions they were set.




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