Preprint Article Version 1 Preserved in Portico This version is not peer-reviewed

Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions

Version 1 : Received: 13 April 2021 / Approved: 15 April 2021 / Online: 15 April 2021 (14:48:49 CEST)

A peer-reviewed article of this Preprint also exists.

Taylor, C.O.; Manov, N.F.; Crew, K.D.; Weng, C.; Connolly, J.J.; Chute, C.G.; Ford, D.E.; Lehmann, H.; Rahm, A.K.; Kullo, I.J.; Caraballo, P.J.; Holm, I.A.; Mathews, D. Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions. J. Pers. Med. 2021, 11, 399. Taylor, C.O.; Manov, N.F.; Crew, K.D.; Weng, C.; Connolly, J.J.; Chute, C.G.; Ford, D.E.; Lehmann, H.; Rahm, A.K.; Kullo, I.J.; Caraballo, P.J.; Holm, I.A.; Mathews, D. Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions. J. Pers. Med. 2021, 11, 399.

Journal reference: J. Pers. Med. 2021, 11, 399
DOI: 10.3390/jpm11050399

Abstract

There is a need for multimodal strategies to keep research participants informed about study results. Our aim was to characterize preferences of genomic research participants from two institutions along four dimensions of general research result updates: content, timing, mechanism, and frequency. Methods: We conducted a web-based cross-sectional survey that was administered from 6-25-2018 to 12-5-2018. Results: 397 participants completed the survey, most of whom (96%) expressed a desire to receive research updates. Preferences with high endorsement included: update content (brief descriptions of major findings, descriptions of purpose and goals, and educational material); update timing (when the research is completed, when findings are reviewed, when findings are published, and when the study status changes); update mechanism (email with updates, and email newsletter); and update frequency (every three months). Hierarchical cluster analyses based on the four update preferences identified four profiles of participants with similar preference patterns. Very few participants in the largest profile were comfortable with budgeting less money for research activities so that researchers have money to set up services to send research result updates to study participants. Conclusion: This work provides evidence of a need for funders to incentivize researchers to communicate results to participants.

Subject Areas

study participation; communication; survey; general research results

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