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- W2891865438 abstract "IntroductionThe devolvement of health and social care in Greater Manchester, England provides the private and public sectors with a unique opportunity to build comprehensive information sharing agreements. Shared information governance is key to enabling the rapid sharing of data which will underpin our ability to radically transform population health.
 Objectives and ApproachIn 2013 the UK Government introduced a data sharing opt-out programme called Care.data. This programme aimed to extract data at GP level and anonymise data which could then be shared amongst those inside and outside the NHS. This programme was greeted with widespread public mistrust and abandoned in 2016. Care.data demonstrated that public concerns can de-rail efforts to improve data sharing. The key objective for this piece of work was to use public engagement activities as a means of identifying and unpicking public concerns about data-linkage and sharing as part of wider efforts to establish a social license in health.
 ResultsDiscursive responses were analysed using thematic analysis and word frequency analysis. Combining thematic analysis and word frequency analysis helped to unpack the data by facilitating the identification and perceived importance of broad themes and sub-themes.
 To date, analysis has identified a number of ‘Global Themes’ and 'Sub-themes' which will need to be addressed before we can establish a social license in health and social care with the public:
 Global Themes related to:
 
 Trust/mistrust
 Privacy and confidentiality/breaches of privacy and confidentiality
 
 Sub-themes related to:
 
 Security of systems
 Rest of the world security
 What a third party might do with health data
 Data ownership
 Health data being used for private and or commercial profit
 How others perceive you
 Access to future treatment
 
 Conclusion/ImplicationsOur deliberative discussions indicated concerns across culture and ethnic groups that data-sharing and linkage might be used to ‘gate-keep’ future access to treatment. Given that congruent social licenses are built on legitimacy, credibility and trust further work is required to allay public fears regarding future access to treatment." @default.
- W2891865438 created "2018-09-27" @default.
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- W2891865438 date "2018-09-06" @default.
- W2891865438 modified "2023-09-23" @default.
- W2891865438 title "Exploring public attitudes towards data sharing and linkage in health and social care" @default.
- W2891865438 doi "https://doi.org/10.23889/ijpds.v3i4.932" @default.
- W2891865438 hasPublicationYear "2018" @default.
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