Please use this identifier to cite or link to this item: https://doi.org/10.25540/Z5S2-S1V=
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dc.titleTrust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore
dc.contributor.authorTamra Lysaght
dc.contributor.authorAngela Ballantyne
dc.contributor.authorHui Jin Toh
dc.contributor.authorAndrew Lau
dc.contributor.authorSerene Ong
dc.contributor.authorOwen Schaefer
dc.contributor.authorMakoto Shiraishi
dc.contributor.authorWillem van den Boom
dc.contributor.authorVicki Xafis
dc.contributor.authorE Shyong Tai
dc.coverage.spatialSingapore
dc.date.accessioned2021-10-25T00:48:39Z
dc.date.available2021-10-19
dc.date.issued2021-10-19
dc.identifier.citationTamra 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>
dc.identifier.relatedcitationLysaght, 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
dc.identifier.urihttps://scholarbank.nus.edu.sg/handle/10635/204078
dc.identifier.urihttps://doi.org/10.25540/Z5S2-S1V=
dc.description.abstract<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;">This dataset contains data from a stratified random sample of 1000 respondents of Singapore citizens and permanent residents. The dataset was used in the adaptive choice-based conjoint (ACBC) analysis for our household survey conducted in 2021 that with the aim of assessing Singaporean public preferences and priorities for sharing health-related data for Precision Medicine (PM).</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;"> <span style="color: #0070c0;">The 4 attributes used in the ACBC analysis were uses, users of health data, data sensitivity and consent for sharing data. Please refer to the related publication via the link: </span></span><a href="https://doi.org/10.3390/jpm11090921"><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; background: white; mso-bidi-font-weight: bold;">https://doi.org/10.3390/jpm11090921</span></a><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></p>
dc.description.tableofcontents<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';"> &nbsp; &nbsp; &nbsp; &nbsp;- </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;">&ldquo;Variable description&rdquo; consists of the definitions of variables and variable levels listed in the tab &ldquo;Database&rdquo;.</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';"> &nbsp; &nbsp; &nbsp; -&nbsp;</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;">&ldquo;Database&rdquo; 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';"> &nbsp; &nbsp; &nbsp; &nbsp;- </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;">&ldquo;Attribute&rdquo; has the list of attributes and their respective attribute levels that were used in the ACBC analysis.</span></p>
dc.rightsAttribution-NonCommercial 4.0 International
dc.rights.urihttp://creativecommons.org/licenses/by-nc/4.0/
dc.subjectPrecision medicine
dc.subjectbioethics
dc.subjecttrust
dc.subjectdata sharing
dc.subjectsurvey
dc.subjectSingapore
dc.typeDataset
dc.contributor.departmentYONG LOO LIN SCHOOL OF MEDICINE
dc.description.doidoi:10.25540/Z5S2-S1V=
dc.grant.idMOE2017-SSRTG-028
dc.grant.fundingagencySocial Science Research Council Thematic Grant, Ministry of Education, Singapore
dc.grant.fundingagencyNational Research Foundation Singapore
dc.grant.fundingagencyNational Medical Research Council, Ministry of Health, Singapore
dc.relation.item10.3390/jpm11090921
dc.relation.item10635/228270
dc.type.dataset.xlsx
dc.description.methods<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&rsquo; 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&rsquo;s details: This section was made up of the interviewers&rsquo; ID and gender, to assess if the interviewers&rsquo; 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&rsquo; 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;">&nbsp;</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&rsquo; 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;">&nbsp;</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&rsquo; 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';"> &nbsp; &nbsp; &nbsp; -&nbsp;</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';"> &nbsp; &nbsp; &nbsp; -&nbsp;</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&rsquo; 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&rsquo;s relative importance is high (i.e. the attribute holds more value in respondents&rsquo; choices compared to the other attributes).</span></p>
dc.description.technicalinfo<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&rsquo;s relative importance derives from the part-worth utilities.</span></p>
dc.description.contactprofileTamra Lysaght
dc.description.contactprofileHui Jin Toh
dc.description.contactprofileWillem van den Boom
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