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Examining the Inclusion of Trust and Trust‐Building Principles in European Union, Italian, French, and Swiss Health Data Sharing Legislations: A Framework Analysis.

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Title: Examining the Inclusion of Trust and Trust‐Building Principles in European Union, Italian, French, and Swiss Health Data Sharing Legislations: A Framework Analysis.
Authors: ZAVATTARO, FEDERICA, von WYL, VIKTOR, GILLE, FELIX
Source: Milbank Quarterly. Dec2024, Vol. 102 Issue 4, p973-1003. 31p.
Subjects: Data security, Professional autonomy, Documentation, Health information services, Policy sciences, Government policy, Autonomy (Psychology), Health policy, Responsibility, Data curation, Privacy, International agencies, Decision making, Electronic data interchange, International relations, Trust, Conceptual structures, Communication, Electronic health records, Management of medical records, Public health, Medical ethics, Medicine information services, Time, Government regulation, European Union
Geographic Terms: Italy, France, Switzerland
Abstract: Policy PointsFirst, policymakers can strengthen the inherent trust‐building effect of legislations on citizens by incorporating trust‐building principles within health data‐sharing legislations in a recognizable and comprehensive manner to explicitly signal public trust to policy implementers as one of the policy outcomes to be achieved in the implementation phase.Second, policymakers can use the proposed "public trust in health data sharing" framework as an initial guide to incorporate trust‐building principles within health data‐sharing legislations. Context: Public trust is critical to both system legitimacy and the successful implementation of data‐driven health initiatives. Legislations are an essential instrument for building public trust, as they can have a dual effect on trust: a passive effect by reinforcing the public perception of an active regulatory system that upholds the rule of law and an active effect as a tool for policymakers to signal trust‐building actions to be undertaken during the implementation phase. However, there is limited evidence on the extent to which health data‐sharing legislations contain references to trust and trust‐building principles for their practical implementation. Methods: By applying an evidence‐based "public trust in health data sharing" framework, 36 legislations from the European Union (EU), Italy, France, and Switzerland on health data sharing were analyzed to assess 1) how the term "trust" is embedded in legislations, and 2) the presence and quality of trust‐building principles within the selected legislations. Findings: Nine legislations incorporated references to "trust," mainly within the explanatory memorandum and preambles of EU legislations. The most prevalent trust‐building principles were "agencies of accountability" (72%) and data "security" (70%). In contrast, the principles "public information" (14%) and "time" (6%) were the least presented. Moreover, the qualitative analysis showed that the majority of the trust‐building principles were implicit in the legal text, with Swiss legislations having the highest number of explicit references. Conclusions: The limited and implicit use of "trust" and trust‐building principles in EU, Italian, French, and Swiss legislation emphasizes the opportunity to raise policymakers' awareness of these principles. The proposed framework provides an initial guide for policymakers to incorporate trust‐building principles within health data‐sharing legislations in a recognizable and comprehensive manner. This ensures that policy implementers at various stages of the policy process can implement trust‐building actions, contributing to public trust building in both European and national health data‐sharing initiatives. [ABSTRACT FROM AUTHOR]
Copyright of Milbank Quarterly is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Examining the Inclusion of Trust and Trust‐Building Principles in European Union, Italian, French, and Swiss Health Data Sharing Legislations: A Framework Analysis.
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  Data: <searchLink fieldCode="JN" term="%22Milbank+Quarterly%22">Milbank Quarterly</searchLink>. Dec2024, Vol. 102 Issue 4, p973-1003. 31p.
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  Data: <searchLink fieldCode="DE" term="%22Data+security%22">Data security</searchLink><br /><searchLink fieldCode="DE" term="%22Professional+autonomy%22">Professional autonomy</searchLink><br /><searchLink fieldCode="DE" term="%22Documentation%22">Documentation</searchLink><br /><searchLink fieldCode="DE" term="%22Health+information+services%22">Health information services</searchLink><br /><searchLink fieldCode="DE" term="%22Policy+sciences%22">Policy sciences</searchLink><br /><searchLink fieldCode="DE" term="%22Government+policy%22">Government policy</searchLink><br /><searchLink fieldCode="DE" term="%22Autonomy+%28Psychology%29%22">Autonomy (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Health+policy%22">Health policy</searchLink><br /><searchLink fieldCode="DE" term="%22Responsibility%22">Responsibility</searchLink><br /><searchLink fieldCode="DE" term="%22Data+curation%22">Data curation</searchLink><br /><searchLink fieldCode="DE" term="%22Privacy%22">Privacy</searchLink><br /><searchLink fieldCode="DE" term="%22International+agencies%22">International agencies</searchLink><br /><searchLink fieldCode="DE" term="%22Decision+making%22">Decision making</searchLink><br /><searchLink fieldCode="DE" term="%22Electronic+data+interchange%22">Electronic data interchange</searchLink><br /><searchLink fieldCode="DE" term="%22International+relations%22">International relations</searchLink><br /><searchLink fieldCode="DE" term="%22Trust%22">Trust</searchLink><br /><searchLink fieldCode="DE" term="%22Conceptual+structures%22">Conceptual structures</searchLink><br /><searchLink fieldCode="DE" term="%22Communication%22">Communication</searchLink><br /><searchLink fieldCode="DE" term="%22Electronic+health+records%22">Electronic health records</searchLink><br /><searchLink fieldCode="DE" term="%22Management+of+medical+records%22">Management of medical records</searchLink><br /><searchLink fieldCode="DE" term="%22Public+health%22">Public health</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+ethics%22">Medical ethics</searchLink><br /><searchLink fieldCode="DE" term="%22Medicine+information+services%22">Medicine information services</searchLink><br /><searchLink fieldCode="DE" term="%22Time%22">Time</searchLink><br /><searchLink fieldCode="DE" term="%22Government+regulation%22">Government regulation</searchLink><br /><searchLink fieldCode="DE" term="%22European+Union%22">European Union</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Italy%22">Italy</searchLink><br /><searchLink fieldCode="DE" term="%22France%22">France</searchLink><br /><searchLink fieldCode="DE" term="%22Switzerland%22">Switzerland</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Policy PointsFirst, policymakers can strengthen the inherent trust‐building effect of legislations on citizens by incorporating trust‐building principles within health data‐sharing legislations in a recognizable and comprehensive manner to explicitly signal public trust to policy implementers as one of the policy outcomes to be achieved in the implementation phase.Second, policymakers can use the proposed "public trust in health data sharing" framework as an initial guide to incorporate trust‐building principles within health data‐sharing legislations. Context: Public trust is critical to both system legitimacy and the successful implementation of data‐driven health initiatives. Legislations are an essential instrument for building public trust, as they can have a dual effect on trust: a passive effect by reinforcing the public perception of an active regulatory system that upholds the rule of law and an active effect as a tool for policymakers to signal trust‐building actions to be undertaken during the implementation phase. However, there is limited evidence on the extent to which health data‐sharing legislations contain references to trust and trust‐building principles for their practical implementation. Methods: By applying an evidence‐based "public trust in health data sharing" framework, 36 legislations from the European Union (EU), Italy, France, and Switzerland on health data sharing were analyzed to assess 1) how the term "trust" is embedded in legislations, and 2) the presence and quality of trust‐building principles within the selected legislations. Findings: Nine legislations incorporated references to "trust," mainly within the explanatory memorandum and preambles of EU legislations. The most prevalent trust‐building principles were "agencies of accountability" (72%) and data "security" (70%). In contrast, the principles "public information" (14%) and "time" (6%) were the least presented. Moreover, the qualitative analysis showed that the majority of the trust‐building principles were implicit in the legal text, with Swiss legislations having the highest number of explicit references. Conclusions: The limited and implicit use of "trust" and trust‐building principles in EU, Italian, French, and Swiss legislation emphasizes the opportunity to raise policymakers' awareness of these principles. The proposed framework provides an initial guide for policymakers to incorporate trust‐building principles within health data‐sharing legislations in a recognizable and comprehensive manner. This ensures that policy implementers at various stages of the policy process can implement trust‐building actions, contributing to public trust building in both European and national health data‐sharing initiatives. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Milbank Quarterly is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1111/1468-0009.12722
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        Text: English
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              Text: Dec2024
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