Beange, I;
Kirkham, EJ;
Fletcher-Watson, S;
Iveson, MH;
Lawrie, SM;
Batty, GD;
Boardman, JP;
... McIntosh, AM; + view all
(2020)
Using a knowledge exchange event to assess study participants' attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved].
Wellcome Open Research
, 5
, Article 24. 10.12688/wellcomeopenres.15651.1.
Preview |
Text
Batty_c04f335a-95e1-4888-81df-42e23024b336_15651_-_iona_beange.pdf - Published Version Download (1MB) | Preview |
Abstract
BACKGROUND: The UK hosts some of the world’s longest-running longitudinal cohort studies, who make repeated observations of their participants and use these data to explore health outcomes. 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 in research are currently unclear. Here we report on an event where 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. There were a series of presentations describing key research results and the audience participated in 15 multiple-choice questions using interactive voting pads. RESULTS: Our participants showed a high level of trust in researchers (87% scoring them 4/5 or 5/5) and doctors (81%); but less trust in commercial companies (35%). They supported the idea of researchers using information from both neonatal blood spots (Guthrie spots) (97% yes) and from electronic health records (95% yes). Our respondents were willing to wear devices like a ’Fit-bit’ (78% agreed) or take a brain scan that might predict later mental illness (73%). However, they were less willing to take a new drug for research purposes (45%). They were keen to encourage others to take part in research; whether that be offering the opportunity to pregnant mothers (97% agreed) or extending invitations to their own children and grandchildren (98%). CONCLUSIONS: Our participants were broadly supportive of research access to data, albeit less supportive when commercial interests were involved. Public engagement events that facilitate two-way interactions can influence and support future research and public engagement efforts.
| Type: | Article |
|---|---|
| Title: | Using a knowledge exchange event to assess study participants' attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved] |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.12688/wellcomeopenres.15651.1 |
| Publisher version: | https://doi.org/10.12688/wellcomeopenres.15651.1 |
| Language: | English |
| Additional information: | This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. http://creativecommons.org/licenses/by/4.0/ |
| Keywords: | Public Engagement, Cohort, Data Science, Data Linkage, Opinion, Guthrie, Health, Scotland, Knowledge Exchange, Big Data, |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Epidemiology and Public Health |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10092691 |
Archive Staff Only
 |
View Item |
