Preferences of the Public for Sharing Health Data: Discrete Choice Experiment
BackgroundDigital 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 inve...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2021-07-01
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| Series: | JMIR Medical Informatics |
| Online Access: | https://medinform.jmir.org/2021/7/e29614 |
| _version_ | 1797735905637695488 |
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| author | Jennifer Viberg Johansson Heidi Beate Bentzen Nisha Shah Eik Haraldsdóttir Guðbjörg Andrea Jónsdóttir Jane Kaye Deborah Mascalzoni Jorien Veldwijk |
| author_facet | Jennifer Viberg Johansson Heidi Beate Bentzen Nisha Shah Eik Haraldsdóttir Guðbjörg Andrea Jónsdóttir Jane Kaye Deborah Mascalzoni Jorien Veldwijk |
| author_sort | Jennifer Viberg Johansson |
| collection | DOAJ |
| description |
BackgroundDigital 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.
ObjectiveThe 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.
MethodsRespondents 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.
ResultsIn 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.
ConclusionsRespondents 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. |
| first_indexed | 2024-03-12T13:05:50Z |
| format | Article |
| id | doaj.art-e32b1b992edd43b38ea3b0feb2cedaa2 |
| institution | Directory Open Access Journal |
| issn | 2291-9694 |
| language | English |
| last_indexed | 2024-03-12T13:05:50Z |
| publishDate | 2021-07-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Medical Informatics |
| spelling | doaj.art-e32b1b992edd43b38ea3b0feb2cedaa22023-08-28T17:00:03ZengJMIR PublicationsJMIR Medical Informatics2291-96942021-07-0197e2961410.2196/29614Preferences of the Public for Sharing Health Data: Discrete Choice ExperimentJennifer Viberg Johanssonhttps://orcid.org/0000-0001-9533-9274Heidi Beate Bentzenhttps://orcid.org/0000-0001-8285-818XNisha Shahhttps://orcid.org/0000-0002-1872-4598Eik Haraldsdóttirhttps://orcid.org/0000-0001-7215-3127Guðbjörg Andrea Jónsdóttirhttps://orcid.org/0000-0002-8852-9560Jane Kayehttps://orcid.org/0000-0002-7311-4725Deborah Mascalzonihttps://orcid.org/0000-0003-4156-1464Jorien Veldwijkhttps://orcid.org/0000-0003-4822-5068 BackgroundDigital 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. ObjectiveThe 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. MethodsRespondents 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. ResultsIn 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. ConclusionsRespondents 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.https://medinform.jmir.org/2021/7/e29614 |
| spellingShingle | Jennifer Viberg Johansson Heidi Beate Bentzen Nisha Shah Eik Haraldsdóttir Guðbjörg Andrea Jónsdóttir Jane Kaye Deborah Mascalzoni Jorien Veldwijk Preferences of the Public for Sharing Health Data: Discrete Choice Experiment JMIR Medical Informatics |
| 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 |
| url | https://medinform.jmir.org/2021/7/e29614 |
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