Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved]
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 adm...
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doaj-b8d4d93fee4f41b187708a71a786cc152020-11-25T03:07:20ZengWellcomeWellcome Open Research2398-502X2020-02-01510.12688/wellcomeopenres.15651.117148Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved]Iona Beange0Elizabeth J. Kirkham1Sue Fletcher-Watson2Matthew H. Iveson3Stephen M. Lawrie4G. David Batty5James P. Boardman6Ian J. Deary7Corri Black8David J. Porteous9Andrew M. McIntosh10Division of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, EH10 5HF, UKDivision of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, EH10 5HF, UKDivision of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, EH10 5HF, UKDivision of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, EH10 5HF, UKDivision of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, EH10 5HF, UKDepartment of Epidemiology and Public Health, University College London Medical School, London, WC1E 7HB, UKDivision of Psychiatry, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, EH10 5HF, UKThe Lothian Birth Cohorts, Division of Psychology, University of Edinburgh, Edinburgh, EH8 9JZ, UKInstitute of Applied Health Sciences, University of Aberdeen, Aberdeen, AB25 2ZD, UKMRC Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh, EH4 2XU, UKThe Lothian Birth Cohorts, Division of Psychology, University of Edinburgh, Edinburgh, EH8 9JZ, UKBackground: 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.https://wellcomeopenresearch.org/articles/5-24/v1 |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Iona Beange Elizabeth J. Kirkham Sue Fletcher-Watson Matthew H. Iveson Stephen M. Lawrie G. David Batty James P. Boardman Ian J. Deary Corri Black David J. Porteous Andrew M. McIntosh |
spellingShingle |
Iona Beange Elizabeth J. Kirkham Sue Fletcher-Watson Matthew H. Iveson Stephen M. Lawrie G. David Batty James P. Boardman Ian J. Deary Corri Black David J. Porteous Andrew M. McIntosh 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 |
author_facet |
Iona Beange Elizabeth J. Kirkham Sue Fletcher-Watson Matthew H. Iveson Stephen M. Lawrie G. David Batty James P. Boardman Ian J. Deary Corri Black David J. Porteous Andrew M. McIntosh |
author_sort |
Iona Beange |
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] |
title_short |
Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved] |
title_full |
Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved] |
title_fullStr |
Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved] |
title_full_unstemmed |
Using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved] |
title_sort |
using a knowledge exchange event to assess study participants’ attitudes to research in a rapidly evolving research context [version 1; peer review: 3 approved] |
publisher |
Wellcome |
series |
Wellcome Open Research |
issn |
2398-502X |
publishDate |
2020-02-01 |
description |
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. |
url |
https://wellcomeopenresearch.org/articles/5-24/v1 |
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