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 25 June 2018 to 5 December 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: 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.
Highlights
Recruiting and retaining participants for biobanks and observational studies are well-known challenges for biomedical research [1,2]
Our study considers participant preferences for general research result updates along four dimensions: content, timing, mechanism, and frequency
As hypothesized, we found that there was high endorsement of preferences to receive updates on content types that are already routinely prepared by research teams, including preparing descriptions of study purpose and goals and brief descriptions of major findings
Summary
Recruiting and retaining participants for biobanks and observational studies are well-known challenges for biomedical research [1,2]. Population biobanks are essential structures to store and manage biological samples and information that can be used for research [3,4]. With the willingness to participate in biobanks correlated to opportunities to be updated about the biobanks [5], soliciting preferences will be key to maintaining successful and patient-centered population biobanks. Providing such opportunities for genomic research participants to be updated on general research results, in particular, holds promise to encourage new and continued participation [6,7] and offers potential value back to the participant as a form of reciprocity and a signal of respect [8]. There is a need to understand if there are distinct groups of individuals who have similar preferences for being updated about research (i.e., preference profiles)
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