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Accepted for/Published in: Journal of Medical Internet Research

Date Submitted: Mar 7, 2023
Date Accepted: Sep 29, 2023

The final, peer-reviewed published version of this preprint can be found here:

Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries

Biasiotto R, Viberg Johansson J, Alemu MB, Romano V, Bentzen HB, Kaye J, Ancillotti M, Blom JMC, Chassang G, Hallinan D, Jónsdóttir GA, Monasterio Astobiza A, Rial-Sebbag E, Rodríguez-Arias D, Shah N, Skovgaard L, Staunton C, Tschigg K, Veldwijk J, Mascalzoni D

Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries

J Med Internet Res 2023;25:e47066

DOI: 10.2196/47066

PMID: 37995125

PMCID: 10704315

Public preferences for digital health data sharing: a discrete choice experiment in 12 European countries

  • Roberta Biasiotto; 
  • Jennifer Viberg Johansson; 
  • Melaku Birhanu Alemu; 
  • Virginia Romano; 
  • Heidi Beate Bentzen; 
  • Jane Kaye; 
  • Mirko Ancillotti; 
  • Johanna Maria Catharina Blom; 
  • Gauthier Chassang; 
  • Dara Hallinan; 
  • Guðbjörg Andrea Jónsdóttir; 
  • Aníbal Monasterio Astobiza; 
  • Emmanuelle Rial-Sebbag; 
  • David Rodríguez-Arias; 
  • Nisha Shah; 
  • Lea Skovgaard; 
  • Ciara Staunton; 
  • Katharina Tschigg; 
  • Jorien Veldwijk; 
  • Deborah Mascalzoni

ABSTRACT

Background:

With new technologies, health data can be collected in a variety of different clinical, research and public health contexts, and then can be used for a range of new purposes. Establishing the public’s views about digital health data sharing is essential for policy-makers to develop effective harmonization initiatives at the European level for digital health data governance.

Objective:

The study investigated public preferences for digital health data sharing.

Methods:

A discrete choice experiment survey was submitted to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the UK) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable or not for them. Each hypothetical scenario was defined by five attributes (“Data collector”, “Data user”, “Reason for data use”, “Information on data sharing and consent”, and “Availability of review process”), which had three to four attribute levels each. A latent class model was run across the whole data set and separately for different European regions (North, Centre, South). Attribute relative importance was calculated for each latent class’s pooled and regional data sets.

Results:

A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data-sharing. In the latent class model, four classes of preferences pattern were identified. While respondents of two classes strongly expressed their preference for data sharing with opposing positions, respondents in the other two classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following as most acceptable: a national authority or academic research as data user; being informed and asked to consent; a review process for data transfer and use or transfer only. On the other hand, a technological company collecting their data and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions.

Conclusions:

This study showed the importance for European respondents of transparency in data use and oversight of health-related data sharing. Regional and intraregional heterogeneity of preferences for data collector and user, reason, type of consent and review calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that usage of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.


 Citation

Please cite as:

Biasiotto R, Viberg Johansson J, Alemu MB, Romano V, Bentzen HB, Kaye J, Ancillotti M, Blom JMC, Chassang G, Hallinan D, Jónsdóttir GA, Monasterio Astobiza A, Rial-Sebbag E, Rodríguez-Arias D, Shah N, Skovgaard L, Staunton C, Tschigg K, Veldwijk J, Mascalzoni D

Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries

J Med Internet Res 2023;25:e47066

DOI: 10.2196/47066

PMID: 37995125

PMCID: 10704315

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