Navigating Online Patient Experiences of Genomic Medicine: Identifying and Overcoming Obstacles for African American Communities

摘要/项目总结 背景基因组医学具有优化诊断、风险预测、预防和治疗的潜力。 治疗决策过程。随着测量遗传变异的技术变得越来越多， 基因组医学的成本效益和改进的临床整合进展缓慢得令人惊讶。用于基因组 要在各专业和人口统计学中成功实施药物， 患者的经历需要被识别和处理。 意义与创新。大多数研究这些障碍的文献都在以下方面对它们进行了研究： 与特定疾病的关系。很少有研究将基因组医学实施的障碍置于背景中 在一系列疾病的宏观因素中，重点关注这些障碍是如何不同的， 非洲裔美国人的经历。鉴于基因组医学临床应用的兴起， 随着社交媒体的普及，各种各样的患者开始分享关于导航的经验， 在线健康网络上的基因组医学。广泛使用这种社交媒体可以帮助研究人员 接触那些难以招募到研究人员的人群，从而提供一个更强大的， 不同的样本，以了解缺乏服务的人口所经历的障碍。此外，针对 由这些在线健康网络带头的干预措施可以用于临床护理， 患者据我们所知，只有一项研究调查了患者在社交媒体上对基因组的讨论， 这项研究没有检查患者报告的障碍。我们的项目将是第一个 数据集，以确定我们怀疑被忽视的系统性障碍，这些障碍对 非裔美国人 目标.我们的目标是建立一个多层次的障碍，患者，特别是更全面的了解 非裔美国人，在尝试接受基因组药物时的经验。随后，我们将进行 进行试点干预，以评估在线健康网络是否有可能缓解其中一些问题 隔栏. 方法.为了推进基因组医学在临床护理中的实施，我们将研究有机 关于在线健康网络上患者报告的障碍的对话，并调查 这些障碍对非裔美国人来说是不同的。然后，我们将测试一种干预措施，解决患者报告的 通过虚拟咨询委员会（VAB）与遗传顾问谁将回答病人的问题，障碍。

ABSTRACT/PROJECT SUMMARY Background. Genomic medicine has the potential to optimize diagnostic, risk prediction, prevention, and treatment decision-making processes. As technologies for measuring genetic variants have become more cost-effective and improved, clinical integration of genomic medicine has been surprisingly slow. For genomic medicine to be successfully implemented across specialties and across demographics, the systemic barriers that patients experience need to be identified and addressed. Significance and Innovation. Most of the literature that has investigated these barriers examined them in relation to a specific disease. Rarely have studies contextualize barriers to genomic medicine implementation within macro-level factors across a spectrum of diseases and with a focus on how these barriers are differently experienced by African Americans. Given the nascence of clinical applications of genomic medicine and the popularity of social media, a diverse body of patients have begun to share experiences about navigating genomic medicine on online health networks. Widespread utilization of such social media can help researchers access populations who have been difficult to recruit for research, and thus to provide a more robust and diverse sample for understanding barriers experienced by underserved populations. Furthermore, targeted interventions spearheaded by these online health networks could be used in clinical care to help interested patients. To our knowledge, only one study has investigated patients' social media discussions of genomic medicine and this study did not examine patient reported barriers. Our project would be the first to tap this dataset to identify systemic barriers that we suspect have been overlooked and which have a greater effect on African Americans. Goal. Our goal is to build a more holistic understanding of the multi-level barriers that patients, especially African Americans, experience when attempting to receive genomic medicine. Subsequently, we will conduct a pilot intervention to assess whether online health networks might have the potential to mitigate some of these barriers. Methods. To advance the implementation of genomic medicine in clinical care, we will examine organic conversations about patient-reported barriers on an online health network and investigate the extent to which these barriers differ for African Americans. We will then test an intervention that addresses patient-reported barriers through a Virtual Advisory Board (VAB) with a genetic counselor who will answer patient questions.