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Development of a plain-language library of educational resources for research participants

  • Elizabeth Witte (a1), Sabune J. Winkler (a1), Joanna Myerson (a1), Aaron Kirby (a2), Jessica Biggers (a1), Jacquelyn-My Do (a1), Mary-Tara Roth (a3), Alyssa K. Gateman (a4), Enrico Cagliero (a1) (a5) and Barbara E. Bierer (a1) (a6)...
Abstract

There is a paucity of educational resources for potential clinical trial participants, particularly resources in plain language, attentive to health literacy principles and translated into native languages. The New England Research Subject Advocacy Group was formed to explore common issues, interests, and concerns related to the experience of participation in clinical research and research participant safety. Specifically, the group sought to increase community awareness and trust through the development and distribution of publicly accessible informational resources. In support of these aims, the group developed a robust library of high-quality, plain-language educational materials covering topics in health research, research participation, and common research procedures, and translated the majority of the materials into an additional 15 languages. These resources have been downloaded over 130,000 times. After English, the most common languages downloaded are Vietnamese, Spanish, and Korean.

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Copyright
This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike licence (http://creativecommons.org/licenses/by-nc-sa/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the same Creative Commons licence is included and the original work is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use.
Corresponding author
*Address for correspondence: B. E. Bierer, 75 Francis Street, Boston, MA 02115, USA. (Email: bbierer@bwh.harvard.edu)
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Co-first author.

Current address: Harvard Catalyst, The Harvard Clinical and Translational Science Center, Boston, MA 02115, USA.

Footnotes
References
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1. Easa, D, et al. The research subject advocate at minority clinical research centers: an added resource for protection of human subjects. Ethnicity & Disease 2005; 15(Suppl. 5): S5107-10.
2. Winkler, SJ, et al. A distributed model: redefining a robust research subject advocacy program at the Harvard Clinical and Translational Science Center. Clinical and Translational Science 2014; 7: 329335.
3. Harvard Catalyst CTSC [Internet] [cited Nov 2, 2015]. (http://catalyst.harvard.edu)
4. Boston University CTSI [Internet] [cited Feb 9, 2016]. (http://www.bumc.bu.edu/crro/)
5. Tufts University CTSI [Internet] [cited Feb 9, 2016]. (http://www.tuftsctsi.org/)
6. University of Massachusetts CTSA [Internet] [cited Feb 9, 2016]. (http://www.umassmed.edu/CCTS/)
7. Dartmouth Synergy [Internet] [cited Nov 2, 2015]. (https://synergy.dartmouth.edu/)
8. Yale Center for Clinical Investigation [Internet] [cited Nov 2, 2015]. (http://ycci.yale.edu/)
9. The Center for Information & Study on Clinical Research Participation (CISCRP) [Internet] [cited Jan 21, 2016]. (https://www.ciscrp.org/programs-events/trial-results/)
10. Simpson, GM, Destine, J. Interpreter services in Massachusetts Acute Care Hospitals [Internet], 2008 [cited Jan 21, 2016]. (http://www.mass.gov/eohhs/docs/dph/health-equity/acute-care-hospitals.pdf)
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Journal of Clinical and Translational Science
  • ISSN: -
  • EISSN: 2059-8661
  • URL: /core/journals/journal-of-clinical-and-translational-science
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