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

引导基因组医学在线患者体验：识别和克服非裔美国人社区的障碍

• 批准号: 10228319
• 负责人: Catherine Astrid Brownstein
• 金额: $ 31.85万
• 依托单位: BOSTON CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-13 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10228319
• 关键词: Address; Affect; African American; Caucasians; Clinical; Communities; Complex; Data; Data Reporting; Data Set; Decision Making; Diagnostic; Disease; Face; Foundations; Genomic medicine; Genomics; Goals; Health; Health Personnel; Health system; Healthcare Systems; Improve Access; Intervention; Interview; Investigation; Learning; Literature; Measures; Methodology; Methods; Not Hispanic or Latino; Participant; Patients; PhenX Toolkit; Population; Prevention; Process; Quality of life; Questionnaires; Reporting; Research; Research Personnel; Respondent; Sampling; Structure; Surveys; System; Technology; Testing; Underserved Population; Work; burden of illness; clinical application; clinical care; cohort; cost effective; demographics; digital intervention; experience; genetic counselor; genetic testing; genetic variant; improved; innovation; insight; interest; medical specialties; novel strategies; online community; patient stratification; patient-level barriers; pharmacovigilance; post intervention; prevent; racial minority; recruit; risk prediction; social; social health determinants; social media; virtual; virtual intervention

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.

摘要/项目摘要 背景。基因组医学有可能优化诊断，风险预测，预防和 治疗决策过程。随着测量遗传变异的技术已变得更多 具有成本效益和改善的基因组医学临床整合的速度令人惊讶地缓慢。用于基因组 医学将在特色菜和人口统计学中成功实施，该系统障碍 患者的经历需要确定和解决。 意义和创新。研究了这些障碍的大多数文献都检查了它们 与特定疾病有关。很少有研究将基因组医学实施的障碍与情境相关 在各种疾病范围内的宏观因素中，重点是这些障碍如何不同 由非裔美国人体验。鉴于基因组医学的临床应用和 社交媒体的普及，各种各样的患者已经开始分享有关导航的经验 在线健康网络上的基因组医学。这种社交媒体的广泛利用可以帮助研究人员 访问很难招募研究的人群，从而提供更强大的人 多种样本，以理解服务不足的人群所经历的障碍。此外，针对性 这些在线健康网络带头的干预措施可以用于临床护理中，以帮助感兴趣 患者。据我们所知，只有一项研究调查了患者对基因组的社交媒体讨论 医学和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点击此事的项目 数据集以识别我们怀疑已被忽视的系统障碍，并且对 非裔美国人。 目标。我们的目标是对患者，尤其是患者的多层次障碍建立更全面的理解 非洲裔美国人，试图接受基因组医学时的经验。随后，我们将进行 试点干预以评估在线健康网络是否有可能减轻其中一些 障碍。 方法。为了推进基因组医学在临床护理中的实施，我们将检查有机 关于在线健康网络上有关患者报告障碍的对话，并研究了多大程度上 这些障碍在非洲裔美国人方面有所不同。然后，我们将测试一种解决患者报告的干预措施 通过虚拟顾问委员会（VAB）与遗传顾问一起回答患者问题的障碍。