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Development of a plain-language library of educational resources for research participants
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, interest...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Cambridge University Press
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6799308/ https://www.ncbi.nlm.nih.gov/pubmed/31660216 http://dx.doi.org/10.1017/cts.2018.16 |
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author | Witte, Elizabeth Winkler, Sabune J. Myerson, Joanna Kirby, Aaron Biggers, Jessica Do, Jacquelyn-My Roth, Mary-Tara Gateman, Alyssa K. Cagliero, Enrico Bierer, Barbara E. |
author_facet | Witte, Elizabeth Winkler, Sabune J. Myerson, Joanna Kirby, Aaron Biggers, Jessica Do, Jacquelyn-My Roth, Mary-Tara Gateman, Alyssa K. Cagliero, Enrico Bierer, Barbara E. |
author_sort | Witte, Elizabeth |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-6799308 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Cambridge University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-67993082019-10-28 Development of a plain-language library of educational resources for research participants Witte, Elizabeth Winkler, Sabune J. Myerson, Joanna Kirby, Aaron Biggers, Jessica Do, Jacquelyn-My Roth, Mary-Tara Gateman, Alyssa K. Cagliero, Enrico Bierer, Barbara E. J Clin Transl Sci Implementation, Policy and Community Engagement 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. Cambridge University Press 2018-07-06 /pmc/articles/PMC6799308/ /pubmed/31660216 http://dx.doi.org/10.1017/cts.2018.16 Text en © The Association for Clinical and Translational Science 2018 http://creativecommons.org/licenses/by-nc-sa/4.0/ 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. |
spellingShingle | Implementation, Policy and Community Engagement Witte, Elizabeth Winkler, Sabune J. Myerson, Joanna Kirby, Aaron Biggers, Jessica Do, Jacquelyn-My Roth, Mary-Tara Gateman, Alyssa K. Cagliero, Enrico Bierer, Barbara E. Development of a plain-language library of educational resources for research participants |
title | Development of a plain-language library of educational resources for research participants |
title_full | Development of a plain-language library of educational resources for research participants |
title_fullStr | Development of a plain-language library of educational resources for research participants |
title_full_unstemmed | Development of a plain-language library of educational resources for research participants |
title_short | Development of a plain-language library of educational resources for research participants |
title_sort | development of a plain-language library of educational resources for research participants |
topic | Implementation, Policy and Community Engagement |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6799308/ https://www.ncbi.nlm.nih.gov/pubmed/31660216 http://dx.doi.org/10.1017/cts.2018.16 |
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