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A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

BACKGROUND: Genome cohort studies are used to analyze interactions between genetic and environmental factors, providing valuable information for personalized healthcare. Large-scale and long-term cohort studies require a number of specially trained personnel, of whom those involved in obtaining info...

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Autores principales: Sakurai-Yageta, Mika, Kawame, Hiroshi, Kuriyama, Shinichi, Hozawa, Atsushi, Nakaya, Naoki, Nagami, Fuji, Minegishi, Naoko, Ogishima, Soichi, Takai-Igarashi, Takako, Danjoh, Inaho, Obara, Taku, Ishikuro, Mami, Kobayashi, Tomoko, Aizawa, Yayoi, Ishihara, Rino, Yamamoto, Masayuki, Suzuki, Yoichi
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6679441/
https://www.ncbi.nlm.nih.gov/pubmed/31375111
http://dx.doi.org/10.1186/s12909-019-1725-5
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author Sakurai-Yageta, Mika
Kawame, Hiroshi
Kuriyama, Shinichi
Hozawa, Atsushi
Nakaya, Naoki
Nagami, Fuji
Minegishi, Naoko
Ogishima, Soichi
Takai-Igarashi, Takako
Danjoh, Inaho
Obara, Taku
Ishikuro, Mami
Kobayashi, Tomoko
Aizawa, Yayoi
Ishihara, Rino
Yamamoto, Masayuki
Suzuki, Yoichi
author_facet Sakurai-Yageta, Mika
Kawame, Hiroshi
Kuriyama, Shinichi
Hozawa, Atsushi
Nakaya, Naoki
Nagami, Fuji
Minegishi, Naoko
Ogishima, Soichi
Takai-Igarashi, Takako
Danjoh, Inaho
Obara, Taku
Ishikuro, Mami
Kobayashi, Tomoko
Aizawa, Yayoi
Ishihara, Rino
Yamamoto, Masayuki
Suzuki, Yoichi
author_sort Sakurai-Yageta, Mika
collection PubMed
description BACKGROUND: Genome cohort studies are used to analyze interactions between genetic and environmental factors, providing valuable information for personalized healthcare. Large-scale and long-term cohort studies require a number of specially trained personnel, of whom those involved in obtaining informed consent play a vital role, especially during the initial phase of such studies. The Japanese Society of Human Genetics (JSHG) previously established a certification system for genome medical research coordinators (GMRCs) responsible for obtaining written consent via face-to-face explanation. Meanwhile, in the Tohoku Medical Megabank Organization (ToMMo), GMRCs are expected to play important roles not only in obtaining informed consent and conducting various assessments, but also in communicating with participants throughout the long-term follow-up. Based on the JSHG program, we therefore developed a specific education and training program for ToMMo GMRCs consisting of 17 lectures, one practical training session on the informed consent procedure, and written and interview examinations. Re-education workshops aimed at self-improvement are also carried out following certification. In this study, we evaluated the education and training program in terms of overall understanding, usefulness, and satisfaction using an anonymous questionnaire. METHODS: An anonymous questionnaire addressing each aspect of the education and training program (understanding, usefulness, and satisfaction) was distributed among 152 qualified ToMMo GMRCs. Responses were received from 94 participants (61.8%). RESULTS: There was a significant association between the level of overall understanding of lectures and medical qualification (nurse or clinical laboratory technologist), but not with age or educational background. The level of understanding and overall usefulness were lower in sessions related to genetics and epidemiology than those dealing with ToMMo practices. In the re-education workshops, GMRCs showed a preference for and hoped to learn more about both background knowledge and research progress in the ToMMo. CONCLUSIONS: The results of our questionnaire suggest that not all ToMMo GMRCs are able to understand everything during the initial education and training program, especially in terms of genomic medicine. Continuous re-education is therefore vital in improving knowledge, skills and motivation, and preparing GMRCs for a specialist role in community-based personalized healthcare. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12909-019-1725-5) contains supplementary material, which is available to authorized users.
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spelling pubmed-66794412019-08-06 A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization Sakurai-Yageta, Mika Kawame, Hiroshi Kuriyama, Shinichi Hozawa, Atsushi Nakaya, Naoki Nagami, Fuji Minegishi, Naoko Ogishima, Soichi Takai-Igarashi, Takako Danjoh, Inaho Obara, Taku Ishikuro, Mami Kobayashi, Tomoko Aizawa, Yayoi Ishihara, Rino Yamamoto, Masayuki Suzuki, Yoichi BMC Med Educ Research Article BACKGROUND: Genome cohort studies are used to analyze interactions between genetic and environmental factors, providing valuable information for personalized healthcare. Large-scale and long-term cohort studies require a number of specially trained personnel, of whom those involved in obtaining informed consent play a vital role, especially during the initial phase of such studies. The Japanese Society of Human Genetics (JSHG) previously established a certification system for genome medical research coordinators (GMRCs) responsible for obtaining written consent via face-to-face explanation. Meanwhile, in the Tohoku Medical Megabank Organization (ToMMo), GMRCs are expected to play important roles not only in obtaining informed consent and conducting various assessments, but also in communicating with participants throughout the long-term follow-up. Based on the JSHG program, we therefore developed a specific education and training program for ToMMo GMRCs consisting of 17 lectures, one practical training session on the informed consent procedure, and written and interview examinations. Re-education workshops aimed at self-improvement are also carried out following certification. In this study, we evaluated the education and training program in terms of overall understanding, usefulness, and satisfaction using an anonymous questionnaire. METHODS: An anonymous questionnaire addressing each aspect of the education and training program (understanding, usefulness, and satisfaction) was distributed among 152 qualified ToMMo GMRCs. Responses were received from 94 participants (61.8%). RESULTS: There was a significant association between the level of overall understanding of lectures and medical qualification (nurse or clinical laboratory technologist), but not with age or educational background. The level of understanding and overall usefulness were lower in sessions related to genetics and epidemiology than those dealing with ToMMo practices. In the re-education workshops, GMRCs showed a preference for and hoped to learn more about both background knowledge and research progress in the ToMMo. CONCLUSIONS: The results of our questionnaire suggest that not all ToMMo GMRCs are able to understand everything during the initial education and training program, especially in terms of genomic medicine. Continuous re-education is therefore vital in improving knowledge, skills and motivation, and preparing GMRCs for a specialist role in community-based personalized healthcare. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12909-019-1725-5) contains supplementary material, which is available to authorized users. BioMed Central 2019-08-02 /pmc/articles/PMC6679441/ /pubmed/31375111 http://dx.doi.org/10.1186/s12909-019-1725-5 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Sakurai-Yageta, Mika
Kawame, Hiroshi
Kuriyama, Shinichi
Hozawa, Atsushi
Nakaya, Naoki
Nagami, Fuji
Minegishi, Naoko
Ogishima, Soichi
Takai-Igarashi, Takako
Danjoh, Inaho
Obara, Taku
Ishikuro, Mami
Kobayashi, Tomoko
Aizawa, Yayoi
Ishihara, Rino
Yamamoto, Masayuki
Suzuki, Yoichi
A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization
title A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization
title_full A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization
title_fullStr A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization
title_full_unstemmed A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization
title_short A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization
title_sort training and education program for genome medical research coordinators in the genome cohort study of the tohoku medical megabank organization
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6679441/
https://www.ncbi.nlm.nih.gov/pubmed/31375111
http://dx.doi.org/10.1186/s12909-019-1725-5
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