'Nothing is really safe': a focus group study on the processes of anonymizing and sharing of health data for research purposes

Journal of Evaluation in Clinical Practice
Gill HaddowJeremy C Wyatt

Abstract

The availability of anonymized data is a keystone of medical research, yet little is known about lay views towards the process of anonymization or on the way that anonymized medical data are transferred to researchers. During May and June 2009, as part of a wider consultation on methods for releasing data to researchers, three focus groups (n = 19) were conducted exploring lay attitudes towards the traditional 'warehouse' model commonly used in medical research for delivering anonymized National Health Service (NHS) data to researchers. The focus groups explored different processes such as the copying of data, use of programmers for linkage and anonymization, the transfer of data and governance. The recognition of the positive aspects of medical research and desire to support it formed the context for discussions. Nonetheless, individuals varied in their attitudes to the use of anonymized data extracts for research from their health records (without consent); although some appeared positive wanted to be asked to consent for this use. Furthermore, participants were acutely aware of security breaches of NHS information nevertheless, they continued to display a high level of trust in NHS staff. Participants were concerned about th...Continue Reading

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Citations

Jan 18, 2013·Informatics for Health & Social Care·Vikraman BaskaranNilmini Wickramasinghe
Feb 5, 2015·International Journal of Medical Informatics·Fiona RiordanAzeem Majeed
Apr 18, 2015·BMC Health Services Research·Fiona Stevenson
Feb 26, 2015·PloS One·Benedikt FecherMarcel Hebing
Nov 28, 2019·Journal of Medical Internet Research·Maria KarampelaMinna Isomursu
Apr 28, 2020·AJOB Empirical Bioethics·Catherine M Hammack-AviranLaura M Beskow
Mar 3, 2015·Journal for Specialists in Pediatric Nursing : JSPN·Shelley SpurrMarcella Ogenchuk
Feb 23, 2021·Journal of Medical Internet Research·Olivia LounsburyAna Luisa Neves

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