Tohoku Medical Megabank Organization, Tohoku University, 2-1 Seiryo-machi, Aoba-ku, Sendai, Miyagi, 980-8573, Japan.
Graduate School of Medicine, Tohoku University, 2-1 Seiryo-machi, Aoba-ku, Sendai, Miyagi, 980-8575, Japan.
BMC Med Educ. 2019 Aug 2;19(1):297. doi: 10.1186/s12909-019-1725-5.
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.
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%).
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.
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.
基因组队列研究用于分析遗传和环境因素之间的相互作用，为个性化医疗提供有价值的信息。大规模和长期的队列研究需要大量专门培训的人员，其中负责通过面对面解释获得知情同意的人员起着至关重要的作用，特别是在这些研究的初始阶段。日本人类遗传学会（JSHG）之前建立了一个基因组医学研究协调员（GMRC）的认证系统，负责通过面对面解释获得书面同意。同时，在东北医疗巨联网组织（ToMMo）中，GMRC 不仅要在获得知情同意和进行各种评估方面发挥重要作用，还要在整个长期随访过程中与参与者进行沟通。基于 JSHG 计划，我们为 ToMMo GMRC 开发了一个专门的教育和培训计划，其中包括 17 次讲座、一次知情同意程序实践培训以及书面和面试考试。认证后还开展了旨在自我提高的再教育研讨会。在这项研究中，我们使用匿名问卷从整体理解、有用性和满意度三个方面评估了教育和培训计划。
向 152 名合格的 ToMMo GMRC 分发了一份关于教育和培训计划各个方面（理解、有用性和满意度）的匿名问卷。从 94 名参与者（61.8%）收到了回复。
讲座的整体理解水平与医疗资格（护士或临床实验室技术员）显著相关，但与年龄或教育背景无关。与处理 ToMMo 实践相关的课程相比，遗传学和流行病学相关课程的理解水平和整体有用性较低。在再教育研讨会上，GMRC 更喜欢并希望更多地了解 ToMMo 的背景知识和研究进展。
我们问卷的结果表明，并非所有 ToMMo GMRC 都能够在初始教育和培训计划中理解所有内容，尤其是在基因组医学方面。因此，持续的再教育对于提高知识、技能和积极性至关重要，并为 GMRC 准备在基于社区的个性化医疗中发挥专业作用。
