Using a knowledge exchange event to assess study participants' attitudes to research in a rapidly evolving research context

Iona Beange* (Corresponding Author), 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

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Background: The UK hosts some of the world's longest-running longitudinal cohort studies, which 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' (88% 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.

Original languageEnglish
Article number24
JournalWellcome open research
Publication statusPublished - 10 Feb 2020

Bibliographical note

Grant information: DJP, IJD and AMM are supported by Wellcome Trust Grant 104036. IJD, DJP, JPB and AMM, IB, EJK and SFW are supported by MRC Mental Health Data Pathfinder Grant MC_PC_17209. AMM and SML are supported by MRC Grant MC_PC_MR/R01910X/1. AMM is supported by MRC Grant MR/S035818/1. Theirworld Edinburgh Birth Cohort is funded by the charity Theirworld (, and is undertaken in the MRC Centre for Reproductive Health, which is funded by MRC Centre Grant (G1002033). CB and DJP are supported by Health Data Research UK, an initiative funded by UK Research and Innovation, Department of Health and Social Care (England) and the devolved administrations, and leading medical research charities.


  • public engagement
  • cohort
  • data science
  • data linkage
  • opinion
  • Guthrie
  • health
  • Scotland
  • knowledge exchange
  • big data
  • Opinion
  • Health
  • Big Data
  • Data Science
  • Public Engagement
  • Cohort
  • Data Linkage
  • Knowledge Exchange


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