教育和电子医疗记录和基因组学网络,挑战和从使用多基因风险评分的大规模临床试验中学到的经验教训
John J Connolly1, Eta S Berner2, Maureen Smith3
1Center for Applied Genomics, Children's Hospital of Philadelphia, PA.
概括
多基因风险评分 (PRS) 可以识别患疾病风险较高的个体. eMERGE网络研究了将PRS归还给不同参与者的教育需求,为患者和提供者开发了定制的资源.
科学领域:
- 基因组学就是基因组学.
- 临床医学 临床医学
- 健康差异 在健康上的差异
背景情况:
- 多基因风险评分 (PRS) 通过识别患有常见复杂疾病风险较高的个体,为主动医疗保健提供了潜力.
- 临床实施PRS需要对患者,提供者和医疗保健系统的准备情况进行彻底评估.
- eMERGE网络是一项合作研究,将PRS返还给25000名参与者,包括多元化和服务不足的人群.
研究的目的:
- 评估与会者,提供者和研究人员关于PRS回归的教育需求.
- 为参与PRS实施的利益相关者开发和协调教育资源和培训计划.
- 应对挑战,并提供解决方案,以在临床环境中实现有效的PRS沟通和理解.
主要方法:
- 在10个eMERGE临床场所开展了重点小组,采访和调查,以了解利益相关者的教育需求.
- 分析了研究结果,以确定教育工具的关键领域,包括感知价值,支持需求,可访问性和知识差距.
- 根据利益相关者的需求,协调培训计划和教育资源.
主要成果:
- 确定了对解决PRS感知好处和价值的工具的关键需求.
- 强调需要为各种参与者和提供者群体量身定制的可访问教育和支持.
- 揭示了与PRS解释和应用有关的特定知识和理解差距.
结论:
- 制定有效的教育策略对于PRS的成功临床整合至关重要.
- 量身定制的教育资源至关重要,使参与者和提供者能够理解和利用PRS.
- eMERGE网络的方法为解决基因组医学实施中的教育挑战提供了一个框架.
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