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  1.  3
    Should Free-Text Data in Electronic Medical Records Be Shared for Research? A Citizens’ Jury Study in the UK.Elizabeth Ford, Malcolm Oswald, Lamiece Hassan, Kyle Bozentko, Goran Nenadic & Jackie Cassell - 2020 - Journal of Medical Ethics 46 (6):367-377.
    BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical (...)
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    “Giving Something Back”: A Systematic Review and Ethical Enquiry Into Public Views on the Use of Patient Data for Research in the United Kingdom and the Republic of Ireland.Jessica Stockdale, Jackie Cassell & Elizabeth Ford - 2019 - Wellcome Open Research 3 (6).
    Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and (...)
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    Response to Commentaries on ‘Should Free-Text Data in Electronic Medical Records Be Shared for Research? A Citizens’ Jury Study in the UK’.Elizabeth Ford & Malcolm Oswald - 2020 - Journal of Medical Ethics 46 (6):384-385.
    We note a range of interesting and challenging points which take forward the discourse around the ethics of sharing patient data. Of most note are criticisms of our jury recruitment and methods; questioning how we can engender trust and support from the wider, uninformed public when we only have the view of a small informed public; asking what work needs to be done to ethically transfer data from a clinical care setting to that of research; suggesting that dynamic consent with (...)
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