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: 10469319
• 负责人: Catherine Astrid Brownstein
• 金额: $ 29.3万
• 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 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10469319
• 关键词: Address; Affect; African American; African American population; 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; implementation barriers; 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 背景资料。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。随着测量基因变异的技术变得越来越多 在成本效益和改善的情况下，基因组医学的临床整合一直令人惊讶地缓慢。用于基因组学 跨专业和跨人口统计的医学成功实施，系统性障碍 患者所经历的这种情况需要被识别和解决。 意义和创新。大多数研究这些障碍的文献都在 与特定疾病的关系。很少有研究将基因组药物实施的障碍与背景联系起来 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 非裔美国人所经历的。鉴于基因组医学的临床应用才刚刚起步， 社交媒体的流行，各种各样的患者开始分享导航的经验 在线健康网络上的基因组医学。这种社交媒体的广泛使用可以帮助研究人员 获取难以招募进行研究的人群，从而提供更强大和 不同的样本，以了解服务不足人群所经历的障碍。此外，有针对性的 由这些在线健康网络带头的干预措施可以用于临床护理，以帮助感兴趣的人 病人。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 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利用这一点的 数据集，以确定我们怀疑已被忽视的系统性障碍，以及哪些对 非裔美国人。 进球了。我们的目标是更全面地了解患者，特别是 非裔美国人，在尝试接受基因组药物时的经验。随后，我们将进行一项 试点干预措施，以评估在线医疗网络是否有可能缓解其中一些问题 障碍。 方法：研究方法。为了推动基因组医学在临床上的实施，我们将检查有机 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，我们将测试针对患者报告的干预 通过虚拟咨询委员会(VAB)设置障碍，并由遗传咨询师回答患者的问题。

项目成果

Using social media listening to understand barriers to genomic medicine for those living with Ehlers-Danlos syndromes and hypermobility spectrum disorders.

• DOI: 10.1111/hex.13755
• 发表时间: 2023-08
• 期刊: HEALTH EXPECTATIONS
• 影响因子: 3.2
• 作者: Kline, Erika;Garrett, Amanda Leigh;Brownstein, Catherine;Ziniel, Sonja;Payton, Erica;Goldin, Aleah;Hoffman, Kathleen;Chandler, Judy;Weber, Shani
• 通讯作者: Weber, Shani