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Depositordc.contributorBeange, Iona
Funderdc.contributor.otherMRC - Medical Research Councilen_UK
Spatial Coveragedc.coverage.spatialScotlanden_UK
Spatial Coveragedc.coverage.spatialUKen
Spatial Coveragedc.coverage.spatialUNITED KINGDOMen
Time Perioddc.coverage.temporalstart=2018-06-10; end=2018-06-10; scheme=W3C-DTFen
Data Creatordc.creatorBeange, Iona
Data Creatordc.creatorMcIntosh, Andrew
Data Creatordc.creatorKirkham, Elizabeth
Data Creatordc.creatorFletcher-Watson, Sue
Data Creatordc.creatorLawrie, Stephen
Data Creatordc.creatorBatty, David
Data Creatordc.creatorBoardman, James
Data Creatordc.creatorBlack, Corri
Data Creatordc.creatorPorteous, David
Date Accessioneddc.date.accessioned2019-12-16T17:23:00Z
Date Availabledc.date.available2019-12-16T17:23:00Z
Citationdc.identifier.citationBeange, Iona; McIntosh, Andrew; Kirkham, Elizabeth; Fletcher-Watson, Sue; Lawrie, Stephen; Batty, David; Boardman, James; Black, Corri; Porteous, David. (2019). A Celebration of Scottish Health Cohort Studies: Participants' attitudes towards data research, 2018 [dataset]. Division of Psychiatry. Centre for Clinical Brain Sciences. University of Edinburgh. https://doi.org/10.7488/ds/2728.en
Persistent Identifierdc.identifier.urihttp://hdl.handle.net/10283/3527
Persistent Identifierdc.identifier.urihttps://doi.org/10.7488/ds/2728
Dataset Description (abstract)dc.description.abstractBACKGROUND. The UK hosts many of the world’s longest running prospective longitudinal birth cohort studies. These projects make repeated observations of their participants and use this data to explore health outcomes and mortality. An alternative method for data collection is record linkage; the linking together of electronic health and administrative records. Applied nationally, this could provide unrivalled opportunities to follow a large number of people in perpetuity. However, public attitudes to the use of data and samples in research are currently unclear. Here we report on an event at which we collected attitudes towards recent opportunities and controversies within health data science. METHODS. The event was attended by ~250 individuals (cohort members and their guests), who had been invited through the offices of their participating cohort studies. Attendees heard talks describing key research results and participated in 15 multiple-choice questions using interactive voting pads. RESULTS. Our participants showed a high level of trust in researchers and doctors, but less trust in commercial companies. They supported the idea of researchers using information from both neonatal blood spots (Guthrie spots) and from health records. Participants said they would be willing to wear devices like a “fit-bit” and to undergo a brain scan that might predict later mental illness. However, they were less willing to change an aspect of their lifestyle or take a new drug for research purposes. They were very keen to encourage others to take part in research; whether that be offering the opportunity to pregnant mothers or indeed extending invitations to their own children and grandchildren CONCLUSIONS. Our participants were broadly supportive of research access to data and samples, albeit less supportive when commercial interests are involved. Public engagement events that facilitate two-way interactions can influence and support future research and public engagement efforts. Ethical permission for this work was granted by The Psychology Research Ethics Committee (PREC) at the University of Edinburgh (Ref No: 327-1718/3). No identifying data were collected from participating individuals. Videos are publicly available on the CCACE YouTube Channel: https://www.youtube.com/channel/UCaemWVOehYht6pylL9zq4nwen_UK
Languagedc.language.isoengen_UK
Publisherdc.publisherDivision of Psychiatry. Centre for Clinical Brain Sciences. University of Edinburghen_UK
Rightsdc.rightsCreative Commons Attribution 4.0 International Public Licenseen
Subjectdc.subjectPublicEngagementen_UK
Subjectdc.subjectCohorten_UK
Subjectdc.subjectDataScienceen_UK
Subjectdc.subjectDataLinkageen_UK
Subjectdc.subjectDataen_UK
Subjectdc.subjectHealthen_UK
Subjectdc.subjectGuthrieen_UK
Subjectdc.subjectOpinionen_UK
Subjectdc.subjectScotlanden_UK
Subject Classificationdc.subject.classificationBiological Sciences::Human Geneticsen_UK
Titledc.titleA Celebration of Scottish Health Cohort Studies: Participants' attitudes towards data researchen_UK
Typedc.typedataseten_UK

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