Governing health data across changing contexts: A focus group study of citizen's views in England, Iceland, and Sweden

N Shah; J Viberg Johansson; E Haraldsdóttir; H B Bentzen; S Coy; D Mascalzoni; G A Jónsdóttir; J Kaye

doi:10.1016/j.ijmedinf.2021.104623

Governing health data across changing contexts: A focus group study of citizen's views in England, Iceland, and Sweden

Int J Med Inform. 2021 Dec:156:104623. doi: 10.1016/j.ijmedinf.2021.104623. Epub 2021 Oct 21.

Authors

N Shah¹, J Viberg Johansson², E Haraldsdóttir³, H B Bentzen⁴, S Coy⁵, D Mascalzoni⁶, G A Jónsdóttir³, J Kaye⁷

Affiliations

¹ Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK. Electronic address: nisha.shah@law.ox.ac.uk.
² Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
³ Social Science Research Institute, University of Iceland, Reykjavik, Iceland.
⁴ Norwegian Research Center for Computers and Law, Faculty of Law, University of Oslo, Oslo, Norway.
⁵ Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK.
⁶ Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden; Institute for Biomedicine, EURAC Research, Bolzano, Italy.
⁷ Centre for Health, Law and Emerging Technologies, Faculty of Law, University of Oxford, Oxford, UK; Centre for Health, Law and Emerging Technologies, Melbourne Law School, University of Melbourne, Australia.

PMID: 34717179
DOI: 10.1016/j.ijmedinf.2021.104623

Abstract

Background: The governance structures associated with health data are evolving in response to advances in digital technologies that enable new ways of capturing, using, and sharing different types of data. Increasingly, health data moves between different contexts such as from healthcare to research, or to commerce and marketing. Crossing these contextual boundaries has the potential to violate societal expectations about the appropriate use of health data and diminish public trust. Understanding citizens' views on the acceptability of and preferences for data use in different contexts is essential for developing information governance policies in these new contexts.

Methods: Focus group design presenting data sharing scenarios in England, Iceland, and Sweden.

Results: Seventy-one participants were recruited. Participants supported the need for data to help understand the observable world, improve medical research, the quality of public services, and to benefit society. However, participants consistently identified the lack of information, transparency and control as barriers to trusting organisations to use data in a way that they considered appropriate. There was considerable support for fair and transparent data sharing practices where all parties benefitted.

Conclusion: Data governance policy should involve all stakeholders' perspectives on an ongoing basis, to inform and implement changes to health data sharing practices that accord with stakeholder views. The Findings showed that (1) data should be used for ethical purposes even when there was commercial interest; (2) data subjects and/or public institutions that provide and share data should also receive benefits from the sharing of data; (3) third parties use of data requires greater transparency and accountability than currently exists, (4) there should be greater information provided to empower data subjects.

Keywords: Data governance; Data privacy; Data sharing; Health data; Public attitudes; Public trust.

Publication types

Research Support, Non-U.S. Gov't
Review

MeSH terms

England
Focus Groups
Humans
Iceland
Information Dissemination* / ethics
Sweden
Trust*