Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries
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 effec...
Published in: | Journal of Medical Internet Research |
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Main Authors: | , , , , , , , , , , , , , , , , , , , |
Format: | Article in Journal/Newspaper |
Language: | English |
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JMIR Publications
2023
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Online Access: | http://hdl.handle.net/10852/107755 https://doi.org/10.2196/47066 |
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ftoslouniv:oai:www.duo.uio.no:10852/107755 |
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Universitet i Oslo: Digitale utgivelser ved UiO (DUO) |
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ftoslouniv |
language |
English |
description |
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 for digital health data governance at the European level. Objective This study investigated public preferences for digital health data sharing. Methods A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes (“data collector,” “data user,” “reason for data use,” “information on data sharing and consent,” and “availability of review process”), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). 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, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 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 to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review ... |
format |
Article in Journal/Newspaper |
author |
Biasiotto, Roberta Viberg Johansson, Jennifer Alemu, Melaku Birhanu Romano, Virginia Bentzen, Heidi Beate Kaye, Jane Ancillotti, Mirko Blom, Johanna Maria Catharina Chassang, Gauthier Hallinan, Dara Jónsdóttir, Guðbjörg Andrea Monasterio Astobiza, Aníbal Rial-Sebbag, Emmanuelle Rodríguez-Arias, David Shah, Nisha Skovgaard, Lea Staunton, Ciara Tschigg, Katharina Veldwijk, Jorien Mascalzoni, Deborah |
spellingShingle |
Biasiotto, Roberta Viberg Johansson, Jennifer Alemu, Melaku Birhanu Romano, Virginia Bentzen, Heidi Beate Kaye, Jane Ancillotti, Mirko Blom, Johanna Maria Catharina Chassang, Gauthier Hallinan, Dara Jónsdóttir, Guðbjörg Andrea Monasterio Astobiza, Aníbal Rial-Sebbag, Emmanuelle Rodríguez-Arias, David Shah, Nisha Skovgaard, Lea Staunton, Ciara Tschigg, Katharina Veldwijk, Jorien Mascalzoni, Deborah Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries |
author_facet |
Biasiotto, Roberta Viberg Johansson, Jennifer Alemu, Melaku Birhanu Romano, Virginia Bentzen, Heidi Beate Kaye, Jane Ancillotti, Mirko Blom, Johanna Maria Catharina Chassang, Gauthier Hallinan, Dara Jónsdóttir, Guðbjörg Andrea Monasterio Astobiza, Aníbal Rial-Sebbag, Emmanuelle Rodríguez-Arias, David Shah, Nisha Skovgaard, Lea Staunton, Ciara Tschigg, Katharina Veldwijk, Jorien Mascalzoni, Deborah |
author_sort |
Biasiotto, Roberta |
title |
Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries |
title_short |
Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries |
title_full |
Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries |
title_fullStr |
Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries |
title_full_unstemmed |
Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries |
title_sort |
public preferences for digital health data sharing: discrete choice experiment study in 12 european countries |
publisher |
JMIR Publications |
publishDate |
2023 |
url |
http://hdl.handle.net/10852/107755 https://doi.org/10.2196/47066 |
genre |
Iceland |
genre_facet |
Iceland |
op_source |
1438-8871 |
op_relation |
EC/H2020/101006012 NORDFORSK/81105 EC/H2020/101006430 EC/HEU/101071203 Biasiotto, Roberta Viberg Johansson, Jennifer Alemu, Melaku Birhanu Romano, Virginia Bentzen, Heidi Beate Kaye, Jane Ancillotti, Mirko Blom, Johanna Maria Catharina Chassang, Gauthier Hallinan, Dara Jónsdóttir, Guðbjörg Andrea Monasterio Astobiza, Aníbal Rial-Sebbag, Emmanuelle Rodríguez-Arias, David Shah, Nisha Skovgaard, Lea Staunton, Ciara Tschigg, Katharina Veldwijk, Jorien Mascalzoni, Deborah . Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries. Journal of Medical Internet Research. 2023, 25, e47066 http://hdl.handle.net/10852/107755 2212961 info:ofi/fmt:kev:mtx:ctx&ctx_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.jtitle=Journal of Medical Internet Research&rft.volume=25&rft.spage=e47066&rft.date=2023 Journal of Medical Internet Research 25 https://doi.org/10.2196/47066 |
op_rights |
Attribution 4.0 International https://creativecommons.org/licenses/by/4.0/ |
op_doi |
https://doi.org/10.2196/47066 |
container_title |
Journal of Medical Internet Research |
container_volume |
25 |
container_start_page |
e47066 |
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1810452395076878336 |
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ftoslouniv:oai:www.duo.uio.no:10852/107755 2024-09-15T18:14:37+00:00 Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries ENEngelskEnglishPublic Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries Biasiotto, Roberta Viberg Johansson, Jennifer Alemu, Melaku Birhanu Romano, Virginia Bentzen, Heidi Beate Kaye, Jane Ancillotti, Mirko Blom, Johanna Maria Catharina Chassang, Gauthier Hallinan, Dara Jónsdóttir, Guðbjörg Andrea Monasterio Astobiza, Aníbal Rial-Sebbag, Emmanuelle Rodríguez-Arias, David Shah, Nisha Skovgaard, Lea Staunton, Ciara Tschigg, Katharina Veldwijk, Jorien Mascalzoni, Deborah 2023-12-13T12:35:48Z http://hdl.handle.net/10852/107755 https://doi.org/10.2196/47066 EN eng JMIR Publications EC/H2020/101006012 NORDFORSK/81105 EC/H2020/101006430 EC/HEU/101071203 Biasiotto, Roberta Viberg Johansson, Jennifer Alemu, Melaku Birhanu Romano, Virginia Bentzen, Heidi Beate Kaye, Jane Ancillotti, Mirko Blom, Johanna Maria Catharina Chassang, Gauthier Hallinan, Dara Jónsdóttir, Guðbjörg Andrea Monasterio Astobiza, Aníbal Rial-Sebbag, Emmanuelle Rodríguez-Arias, David Shah, Nisha Skovgaard, Lea Staunton, Ciara Tschigg, Katharina Veldwijk, Jorien Mascalzoni, Deborah . Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries. Journal of Medical Internet Research. 2023, 25, e47066 http://hdl.handle.net/10852/107755 2212961 info:ofi/fmt:kev:mtx:ctx&ctx_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.jtitle=Journal of Medical Internet Research&rft.volume=25&rft.spage=e47066&rft.date=2023 Journal of Medical Internet Research 25 https://doi.org/10.2196/47066 Attribution 4.0 International https://creativecommons.org/licenses/by/4.0/ 1438-8871 Journal article Tidsskriftartikkel Peer reviewed PublishedVersion 2023 ftoslouniv https://doi.org/10.2196/47066 2024-08-05T14:09:29Z 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 for digital health data governance at the European level. Objective This study investigated public preferences for digital health data sharing. Methods A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes (“data collector,” “data user,” “reason for data use,” “information on data sharing and consent,” and “availability of review process”), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). 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, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 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 to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review ... Article in Journal/Newspaper Iceland Universitet i Oslo: Digitale utgivelser ved UiO (DUO) Journal of Medical Internet Research 25 e47066 |