Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

Jennifer Viberg Johansson*, Nisha Shah, Eik Haraldsdóttir, Heidi Beate Bentzen, Sarah Coy, Jane Kaye, Deborah Mascalzoni, Jorien Veldwijk

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Background: Discrete Choice Experiment (DCE) is a well-established technique to elicit individual preferences, but it has rarely been used to elicit governance preferences for health data sharing. Objectives: The aim of this article was to describe the process of identifying attributes for a DCE study aiming to elicit preferences of citizens in Sweden, Iceland and the UK for governance mechanisms for digitally sharing different kinds of health data in different contexts. Methods: A three-step approach was utilised to inform the attribute and level selection: 1) Attribute identification, 2) Attribute development and 3) Attribute refinement. First, we developed an initial set of potential attributes from a literature review and a workshop with experts. To further develop attributes, focus group discussions with citizens (n = 13), ranking exercises among focus group participants (n = 48) and expert interviews (n = 18) were performed. Thereafter, attributes were refined using group discussion (n = 3) with experts as well as cognitive interviews with citizens (n = 11). Results: The results led to the selection of seven attributes for further development: 1) level of identification, 2) the purpose of data use, 3) type of information, 4) consent, 5) new data user, 6) collector and 7) the oversight of data sharing. Differences were found between countries regarding the order of top three attributes. The process outlined participants’ conceptualisation of the chosen attributes, and what we learned for our attribute development phase. Conclusions: This study demonstrates a process for selection of attributes for a (multi-country) DCE involving three stages: Attribute identification, Attribute development and Attribute refinement. This study can contribute to improve the ethical aspects and good practice of this phase in DCE studies. Specifically, it can contribute to the development of governance mechanisms in the digital world, where people's health data are shared for multiple purposes.

Original languageEnglish
Article number101625
JournalTechnology in Society
Volume66
DOIs
Publication statusPublished - Aug 2021

Bibliographical note

Funding Information:
This work was supported by NordForsk [grant number 81105 ] and the Economic and Social Research Council (part of the UK Research and Innovation, United Kingdom ). The funders had no influence on the design or writing of the article. Our greatest gratitude goes to all participants of the focus group discussions and the expert interviewees. Thank you for your time and for sharing your experiences and ideas generously. We would also like to acknowledge Nia Roberts, Outreach Librarian, Bodleian Health Care Libraries, for her help with the searching strategy of the literature review.

Publisher Copyright:
© 2021 The Author(s)

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