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Preferences of the Public for Sharing Health Data: Discrete Choice Experiment
BACKGROUND: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people’s prefe...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8406119/ https://www.ncbi.nlm.nih.gov/pubmed/36260402 http://dx.doi.org/10.2196/29614 |
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author | Viberg Johansson, Jennifer Bentzen, Heidi Beate Shah, Nisha Haraldsdóttir, Eik Jónsdóttir, Guðbjörg Andrea Kaye, Jane Mascalzoni, Deborah Veldwijk, Jorien |
author_facet | Viberg Johansson, Jennifer Bentzen, Heidi Beate Shah, Nisha Haraldsdóttir, Eik Jónsdóttir, Guðbjörg Andrea Kaye, Jane Mascalzoni, Deborah Veldwijk, Jorien |
author_sort | Viberg Johansson, Jennifer |
collection | PubMed |
description | BACKGROUND: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people’s preferences for sharing digital health data. OBJECTIVE: The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts. METHODS: Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates. RESULTS: In the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents’ willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels. CONCLUSIONS: Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism. |
format | Online Article Text |
id | pubmed-8406119 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-84061192021-09-14 Preferences of the Public for Sharing Health Data: Discrete Choice Experiment Viberg Johansson, Jennifer Bentzen, Heidi Beate Shah, Nisha Haraldsdóttir, Eik Jónsdóttir, Guðbjörg Andrea Kaye, Jane Mascalzoni, Deborah Veldwijk, Jorien JMIR Med Inform Original Paper BACKGROUND: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people’s preferences for sharing digital health data. OBJECTIVE: The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts. METHODS: Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates. RESULTS: In the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents’ willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels. CONCLUSIONS: Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism. JMIR Publications 2021-07-05 /pmc/articles/PMC8406119/ /pubmed/36260402 http://dx.doi.org/10.2196/29614 Text en ©Jennifer Viberg Johansson, Heidi Beate Bentzen, Nisha Shah, Eik Haraldsdóttir, Guðbjörg Andrea Jónsdóttir, Jane Kaye, Deborah Mascalzoni, Jorien Veldwijk. Originally published in JMIR Medical Informatics (https://medinform.jmir.org), 05.07.2021. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Medical Informatics, is properly cited. The complete bibliographic information, a link to the original publication on https://medinform.jmir.org/, as well as this copyright and license information must be included. |
spellingShingle | Original Paper Viberg Johansson, Jennifer Bentzen, Heidi Beate Shah, Nisha Haraldsdóttir, Eik Jónsdóttir, Guðbjörg Andrea Kaye, Jane Mascalzoni, Deborah Veldwijk, Jorien Preferences of the Public for Sharing Health Data: Discrete Choice Experiment |
title | Preferences of the Public for Sharing Health Data: Discrete Choice Experiment |
title_full | Preferences of the Public for Sharing Health Data: Discrete Choice Experiment |
title_fullStr | Preferences of the Public for Sharing Health Data: Discrete Choice Experiment |
title_full_unstemmed | Preferences of the Public for Sharing Health Data: Discrete Choice Experiment |
title_short | Preferences of the Public for Sharing Health Data: Discrete Choice Experiment |
title_sort | preferences of the public for sharing health data: discrete choice experiment |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8406119/ https://www.ncbi.nlm.nih.gov/pubmed/36260402 http://dx.doi.org/10.2196/29614 |
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