Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

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Main Authors:	Tamra Lysaght, Angela Ballantyne, Hui Jin Toh, Andrew Lau, Serene Ong, Owen Schaefer, Makoto Shiraishi, Willem van den Boom, Vicki Xafis, E Shyong Tai
Other Authors:	YONG LOO LIN SCHOOL OF MEDICINE
Format:	Dataset
Published:	2021
Subjects:	Precision medicine bioethics trust data sharing survey Singapore
Online Access:	https://scholarbank.nus.edu.sg/handle/10635/204078 https://doi.org/10.25540/Z5S2-S1V=
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Institution:	National University of Singapore

id	sg-nus-scholar.10635-204078
record_format	dspace
institution	National University of Singapore
building	NUS Library
continent	Asia
country	Singapore Singapore
content_provider	NUS Library
collection	ScholarBank@NUS
topic	Precision medicine bioethics trust data sharing survey Singapore
spellingShingle	Precision medicine bioethics trust data sharing survey Singapore Tamra Lysaght Angela Ballantyne Hui Jin Toh Andrew Lau Serene Ong Owen Schaefer Makoto Shiraishi Willem van den Boom Vicki Xafis E Shyong Tai Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
description	<p class="MsoNormal"><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">The dataset is presented in an Excel workbook consisting of 3 tabs:</span></p> <p class="MsoListParagraphCxSpFirst" style="text-indent: -.25in; mso-list: l0 level1 lfo2;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">        - </span></span></span><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">“Variable description” consists of the definitions of variables and variable levels listed in the tab “Database”.</span></p> <p class="MsoListParagraphCxSpMiddle" style="text-indent: -.25in; mso-list: l1 level1 lfo1;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">       - </span></span></span><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">“Database” consists of the complete set of survey data from 1,000 respondents.</span></p> <p class="MsoListParagraphCxSpMiddle" style="text-indent: -.25in; mso-list: l1 level1 lfo1;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light';"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">        - </span></span></span><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">“Attribute” has the list of attributes and their respective attribute levels that were used in the ACBC analysis.</span></p>
author2	YONG LOO LIN SCHOOL OF MEDICINE
author_facet	YONG LOO LIN SCHOOL OF MEDICINE Tamra Lysaght Angela Ballantyne Hui Jin Toh Andrew Lau Serene Ong Owen Schaefer Makoto Shiraishi Willem van den Boom Vicki Xafis E Shyong Tai
format	Dataset
author	Tamra Lysaght Angela Ballantyne Hui Jin Toh Andrew Lau Serene Ong Owen Schaefer Makoto Shiraishi Willem van den Boom Vicki Xafis E Shyong Tai
author_sort	Tamra Lysaght
title	Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
title_short	Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
title_full	Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
title_fullStr	Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
title_full_unstemmed	Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
title_sort	trust and trade-offs in sharing data for precision medicine: a national survey of singapore
publishDate	2021
url	https://scholarbank.nus.edu.sg/handle/10635/204078 https://doi.org/10.25540/Z5S2-S1V=
_version_	1738844604372877312
spelling	sg-nus-scholar.10635-2040782022-07-12T05:13:54Z Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore Tamra Lysaght Angela Ballantyne Hui Jin Toh Andrew Lau Serene Ong Owen Schaefer Makoto Shiraishi Willem van den Boom Vicki Xafis E Shyong Tai YONG LOO LIN SCHOOL OF MEDICINE Precision medicine bioethics trust data sharing survey Singapore <p class="MsoNormal"><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">The dataset is presented in an Excel workbook consisting of 3 tabs:</span></p> <p class="MsoListParagraphCxSpFirst" style="text-indent: -.25in; mso-list: l0 level1 lfo2;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">        - </span></span></span><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">“Variable description” consists of the definitions of variables and variable levels listed in the tab “Database”.</span></p> <p class="MsoListParagraphCxSpMiddle" style="text-indent: -.25in; mso-list: l1 level1 lfo1;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">       - </span></span></span><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">“Database” consists of the complete set of survey data from 1,000 respondents.</span></p> <p class="MsoListParagraphCxSpMiddle" style="text-indent: -.25in; mso-list: l1 level1 lfo1;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light';"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">        - </span></span></span><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">“Attribute” has the list of attributes and their respective attribute levels that were used in the ACBC analysis.</span></p> doi:10.25540/Z5S2-S1V= <p class="MsoNormal" style="margin-bottom: .0001pt; text-align: justify; line-height: normal; mso-layout-grid-align: none; text-autospace: none;"><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">The survey instrument was designed and administered using Lighthouse Studio (Sawtooth Pty Ltd, Utah, USA), a software platform for ACBC analysis. The dataset consists of six sections: interviewer's details, respondents’ demographics, willingness to share data, trust in institutions, relative importance of attributes, and part-worth utility scores of attribute levels.</span></p> <p class="MsoNormal" style="margin-bottom: .0001pt; text-align: justify; line-height: normal; mso-layout-grid-align: none; text-autospace: none;"><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">- Interviewer’s details: This section was made up of the interviewers’ ID and gender, to assess if the interviewers’ characteristics are associated with the survey responses.</span></p> <p class="MsoListParagraphCxSpMiddle" style="margin-bottom: .0001pt; mso-add-space: auto; text-align: justify; line-height: normal; mso-layout-grid-align: none; text-autospace: none;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">- </span></span><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">Respondents’ demographics: This section had the demographic information such as age, gender and ethnicity, level of education, household type and income, religious identity, and self-reported health status, to test for their associations with survey responses. </span></p> <p class="MsoListParagraphCxSpMiddle" style="margin-bottom: .0001pt; mso-add-space: auto; text-align: justify; line-height: normal; mso-layout-grid-align: none; text-autospace: none;"><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;"> </span><!-- [if !supportLists]--><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">- </span></span><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">Willingness to share data: This section asked about respondents’ willingness to share de-identified data for research studies that has approval from ethics review boards and their reasons.</span></p> <p class="MsoNormal" style="margin-bottom: .0001pt; text-align: justify; line-height: normal; mso-layout-grid-align: none; text-autospace: none;"><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;"> </span><!-- [if !supportLists]--><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">- </span></span><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">Trust in institutions: This section consisted of 6-point Likert-scale questions to rate respondents’ level of trust in various institutions/organizations to use their data. </span></p> <p class="MsoListParagraphCxSpMiddle" style="margin-bottom: .0001pt; mso-add-space: auto; text-align: justify; text-indent: -.25in; line-height: normal; mso-list: l0 level1 lfo1; mso-layout-grid-align: none; text-autospace: none;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">       - </span></span></span><!--[endif]--><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;">Part-worth utilities of attribute levels: The part-worth utility score for each attribute level is a numerical score for each scenario generated by the ACBC analysis. Attribute levels with higher part-worth utility scores are more likely to be preferred by respondents compared to those with lower scores. The ACBC also estimates a utility threshold and utility scores that lies above the threshold implies willingness to share data. Part-worth utility scores can only be compared with other attribute levels within the same attribute category.</span></p> <p class="MsoListParagraphCxSpLast" style="margin-bottom: .0001pt; mso-add-space: auto; text-align: justify; text-indent: -.25in; line-height: normal; mso-list: l0 level1 lfo1; mso-layout-grid-align: none; text-autospace: none;"><!-- [if !supportLists]--><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-fareast-font-family: 'Calibri Light'; color: #0070c0;"><span style="mso-list: Ignore;">-<span style="font: 7.0pt 'Times New Roman';">       - </span></span></span><!--[endif]--><span style="font-size: 10.0pt; mso-bidi-font-size: 13.5pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0; background: white;">Relative importance of attributes: This is a percentage score of how much value each attribute has on the respondents’ decisions related to health data sharing, as compared to other attributes. It is derived from the</span><span style="font-size: 10.0pt; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0;"> <span style="mso-bidi-font-style: italic;">differences </span>between maximum and minimum utilities within each attribute and if these differences are large, attribute’s relative importance is high (i.e. the attribute holds more value in respondents’ choices compared to the other attributes).</span></p> <p><span style="font-size: 10.0pt; mso-bidi-font-size: 11.0pt; line-height: 107%; font-family: 'Calibri Light',sans-serif; mso-ascii-theme-font: major-latin; mso-fareast-font-family: 'Times New Roman'; mso-hansi-theme-font: major-latin; mso-bidi-theme-font: major-latin; color: #0070c0; mso-ansi-language: EN-SG; mso-fareast-language: EN-US; mso-bidi-language: AR-SA;">Part-worth utility scores of attribute levels are calculated in Lighthouse Studio using Hierarchical Bayes (HB) estimation. An attribute’s relative importance derives from the part-worth utilities.</span></p> 2021-10-25T00:48:39Z 2021-10-19 2021-10-19 Dataset Tamra Lysaght, Angela Ballantyne, Hui Jin Toh, Andrew Lau, Serene Ong, Owen Schaefer, Makoto Shiraishi, Willem van den Boom, Vicki Xafis, E Shyong Tai (2021-10-19). Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore. ScholarBank@NUS Repository. [Dataset]. <a href="https://doi.org/10.25540/Z5S2-S1V=" target="_blank">https://doi.org/10.25540/Z5S2-S1V=</a> Lysaght, T.; Ballantyne, A.; Toh, H.J.; Lau, A.; Ong, S.; Schaefer, O.; Shiraishi, M.; van den Boom, W.; Xafis, V.; Tai, E.S. Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore. J. Pers. Med. 2021, 11, 921. https://doi.org/10.3390/jpm11090921 https://scholarbank.nus.edu.sg/handle/10635/204078 https://doi.org/10.25540/Z5S2-S1V= 10.3390/jpm11090921 10635/228270 Attribution-NonCommercial 4.0 International http://creativecommons.org/licenses/by-nc/4.0/ Singapore

Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

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