Online citizen science projects have demonstrated their usefulness for research, however little is known about the potential benefits for volunteers. We conducted 39 interviews (28 volunteers, 11 researchers) to gain a greater understanding of volunteers' motivations, learning and creativity (MLC). In our MLC model we explain that participating and progressing in a project community provides volunteers with many indirect opportunities for learning and creativity. The more aspects that volunteers are involved in, the more likely they are to sustain their participation in the project. These results have implications for the design and management of online citizen science projects. It is important to provide users with tools to communicate in order to supporting social learning, community building and sharing. AbstractCitizen science; Informal learning; Public engagement with science and technology Keywords
The purpose of this study is to characterize the potential benefits and challenges of electronic informed consent (eIC) as a strategy for rapidly expanding the reach of large biobanks while reducing costs and potentially enhancing participant engagement. The Partners HealthCare Biobank (Partners Biobank) implemented eIC tools and processes to complement traditional recruitment strategies in June 2014. Since then, the Partners Biobank has rigorously collected and tracked a variety of metrics relating to this novel recruitment method. From June 2014 through January 2016, the Partners Biobank sent email invitations to 184,387 patients at Massachusetts General Hospital and Brigham and Women’s Hospital. During the same time period, 7078 patients provided their consent via eIC. The rate of consent of emailed patients was 3.5%, and the rate of consent of patients who log into the eIC website at Partners Biobank was 30%. Banking of biospecimens linked to electronic health records has become a critical element of genomic research and a foundation for the NIH’s Precision Medicine Initiative (PMI). eIC is a feasible and potentially game-changing strategy for these large research studies that depend on patient recruitment.
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