Virtual Cancer Genetic Services: Telemedicine Delivery in Community Clinics

描述(申请人提供)：基因组学的基础科学进步为改善人类健康和减轻美国癌症负担提供了巨大的希望，推动了迅速增长的个性化医疗领域。然而，将基因发现转化为有益于个人和人群健康的负责任和有效的应用面临许多挑战。癌症易感性基因筛查是个性化医学的一种应用，已成为临床医学的标准关怀。鉴于对基因检测的需求日益增长，以及广泛传播服务以优化人群健康利益的愿望，目前肿瘤学基因检测的交付模式对基因检测的广泛传播构成了障碍。远程医疗(例如视频会议)已被成功地用于将各种专门医疗服务扩展到低接入人群。然而，我们对远程医疗在个人和人口层面的影响的理解存在重大差距。需要进一步的研究来开发和评估远程医疗通信、交付和传播战略，以优化远程医疗遗传服务的结果，包括癌症遗传学领域内和之外的结果。癌症遗传服务的传播为评估远程医疗提供癌症遗传服务的传播情况以及评估和了解不同人群中个性化医疗的现实结果提供了理想的背景。我们建议开发一种远程医疗(即视频会议)提供癌症基因服务的协议，并评估在现场访问有限或无法访问的社区临床实践中实施该协议的可行性 遗传服务，将个性化癌症风险评估扩大到获得服务受到限制或与使用方面的重大障碍相关的人群。在目标1中，我们将与社区实践合作，为有限或无法获得遗传服务的社区实践开发和试点远程医疗癌症遗传服务协议。在试点中，我们将使用提供者(遗传提供者和社区站点工作人员)和患者调查来完善远程医疗协议和程序。在目标2中，我们将对来自10-12个额外社区实践的关键实践利益相关者进行半结构化访谈，以确定对我们的远程医疗协议在获得有限或无法获得遗传服务的不同临床社区实践中可持续采用和实施至关重要的变量。我们期待这项研究为未来的疗效和有效性研究提供信息，这些研究的重点是在社区实践中更广泛地实施远程医疗癌症基因服务，并使其具有可持续性。此外，我们预计这项研究将为个性化医学的其他新兴和新应用提供信息，促进将研究转化为临床实践，并促进个人、家庭和人口的健康。

DESCRIPTION (provided by applicant): Basic science advances in genomics have provided great promise for improving human health and reducing the burden of cancer in the United States, fueling the rapidly growing field of personalized medicine. Yet, translating gene discoveries into responsible and effective applications that benefit the health of individuals and populations presents many challenges. Genetic screening for cancer susceptibility is one application of "personalized medicine", which has become standard of care in clinical medicine. Given the increasing demand for genetic testing and the desire to disseminate services broadly to optimize population health benefits, the current delivery model for genetic testing in oncology presents barriers to widespread dissemination of genetic testing. Telemedicine (e.g. videoconferencing) has been successfully used to expand a variety of specialized medical services to low access populations. Yet, there are significant gaps in our understanding of the impact of telemedicine at both individual and population levels. Further research is needed to develop and evaluate telemedicine communication, delivery, and dissemination strategies to optimize outcomes of telemedicine genetic services, in and beyond cancer genetics. The diffusion of cancer genetic services provides an ideal context to evaluate the dissemination of telemedicine delivery of cancer genetic services, and to assess and understand the real world outcomes of personalized medicine in diverse populations. We propose to develop a protocol for telemedicine (i.e. videoconferencing) delivery of cancer genetic services, and evaluate the feasibility of implementing it in community clinical practices with limited or no access to on-site genetic services, expanding the availability of personalized cancer risk assessment to populations where access to services has been limited or is associated with significant barriers to utilization. In Aim 1, we will collaborate with community practices to develop and pilot a protocol for telemedicine cancer genetic services for community practices with limited or no access to genetic services. In the pilot, we will use providers (genetic providers & community site staff) and patient surveys to refine the telemedicine protocol and procedures. In Aim 2, we will conduct semi-structured interviews with key practice stakeholders from 10-12 additional community practices to identify variables critical to the sustainable adoption and implementation of our telemedicine protocol in diverse clinical community practices with limited or no access to genetic services. We expect this research to inform future efficacy and effectiveness research focused on broader implementation of, and sustainability telemedicine cancer genetic services in community practices. Additionally, we expect this research to inform the dissemination of other emerging and new applications of personalized medicine, fostering the translation of research to clinical practice, and promoting the health of individuals, families and populations.