Taylor Casey Overby, Manov Natalie Flaks, Crew Katherine D, Weng Chunhua, Connolly John J, Chute Christopher G, Ford Daniel E, Lehmann Harold, Rahm Alanna Kulchak, Kullo Iftikhar J, Caraballo Pedro J, Holm Ingrid A, Mathews Debra
Department of Medicine, Department of Biomedical Engineering, and The Institute for Computational Medicine, Johns Hopkins University, Baltimore, MD 21205, USA.
Department of Medicine, Johns Hopkins University, Baltimore, MD 21205, USA.
J Pers Med. 2021 May 11;11(5):399. doi: 10.3390/jpm11050399.
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.
We conducted a web-based cross-sectional survey that was administered from 25 June 2018 to 5 December 2018.
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.
Future studies may benefit from exploring preferences for research result updates, as we have in our study. In addition, this work provides evidence of a need for funders to incentivize researchers to communicate results to participants.
需要采用多模式策略让研究参与者了解研究结果。我们的目的是从一般研究结果更新的四个维度（内容、时间、机制和频率）来描述来自两个机构的基因组研究参与者的偏好。
我们于2018年6月25日至2018年12月5日进行了一项基于网络的横断面调查。
397名参与者完成了调查，其中大多数（96%）表示希望收到研究进展更新。认可度较高的偏好包括：更新内容（主要发现的简要描述、目的和目标的描述以及教育材料）；更新时间（研究完成时、结果审核时、结果发表时以及研究状态变化时）；更新机制（带有更新内容的电子邮件和电子邮件通讯）；以及更新频率（每三个月一次）。基于这四种更新偏好的层次聚类分析确定了四种具有相似偏好模式的参与者类型。在最大的类型中，很少有参与者愿意为研究活动减少预算，以便研究人员有钱设立向研究参与者发送研究结果更新的服务。
未来的研究可能会从探索研究结果更新的偏好中受益，就像我们在研究中所做的那样。此外，这项工作提供了证据，表明资助者需要激励研究人员向参与者传达结果。
