Precision Medicine at Geisinger
Precision Medicine at Geisinger
批准号:
9355320
负责人:
David H. Ledbetter
金额:
$42.91万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2016
资助国家:
美国
项目状态:
已结题
起止时间:
2016-09-27 至 2017-06-16
关键词:
AdoptedAreaBackBehavioralBloodClinicalClinical DataClinical InformaticsCollectionCommunity HealthDataData ReportingDatabasesDiseaseElementsEmergency CareEnrollmentEnvironmental ExposureFamilyFutureGenerationsGenomic medicineGenomicsGoalsHealthHealth PersonnelHealth systemHealthcareInformaticsInformed ConsentInpatientsLocationLongitudinal StudiesMedical centerNew JerseyPMI cohortParticipantPatientsPennsylvaniaPersonsPhysical ExaminationPopulationPrecision Medicine InitiativeRecruitment ActivityResearchResearch InfrastructureRuralSalivaStable PopulationsSurveysSystemTelephoneTrustUrineclinical data warehousedata sharingdesignexperiencehealth care deliveryhealth disparityimplementation researchmedical specialtiesmobile applicationmobile computingmonitoring devicepatient populationprecision medicineprogramspsychosocialresponserural areasensorsocioeconomic disparitysocioeconomicssound
中文摘要
Geisinger Health System(GHS)已做好充分准备,并已准备就绪,可以作为区域医疗中心医疗保健提供商注册中心参与精准医学计划(PMI)。GHS是一个综合医疗保健服务系统,服务于新泽西和宾夕法尼亚州的地区,总人口超过300万,其中很大一部分居住在小城镇和农村地区。这一地区人口密集,社会经济和卫生方面存在显著差异。值得注意的是,人口迁入/迁出该地区的比率很低,而且大量多代家庭在这个单一的综合系统中接受医疗保健。这种稳定性为基因组学的研究和实施提供了巨大的机会,沿着也为系统与患者之间的百年信任传统提供了机会。简而言之,GHS患者通常代表农村,服务不足和社会经济地位较低的人口,这是PMI多样性的重要组成部分。作为EHR和临床信息学应用的先驱,GHS于1996年采用了Epic,现在已经有了20年的患者纵向临床数据。除了Epic之外,我们还拥有完善的综合企业临床数据仓库,从EHR和数据仓库中提取临床信息的丰富经验,以及已经与我们合作进行精准医学研究的患者群体。这种伙伴关系可以追溯到2006年,在与患者和其他利益相关者广泛接触后,GHS创建了一个全系统的基因组学研究计划,即MyCode®社区健康计划。MyCode®旨在从卫生系统招募参与者,无论健康或疾病状况如何,现在通过结果回报计划为精准医学研究和基因组医学的实施提供了有效的框架。迄今为止,MyCode®已经招募了超过113,000名参与者,他们都拥有广泛的纵向EHR数据(平均约13年),涵盖初级,专科,住院和急诊护理,以及地理编码,以便与公共数据库集成,包括环境数据。MyCode®密切反映了国家PMI队列的拟议设计,包括参与者参与;广泛研究使用的知情同意;数据共享和结果返回;纵向EHR数据;通过各种机制和参与策略(在线患者门户网站,移动的技术,邮件和电话调查以及面对面互动)收集额外的参与者数据。MyCode®展示了GHS在精准医疗领域的能力。我们建议利用我们的MyCode®经验和基础设施以及PMI指导委员会定义的其他元素,在GHS创建单独的PMI招聘计划。大量稳定的人口和长期的信任关系相结合,使盖辛格成为像PMI这样的纵向研究的理想场所。
英文摘要
Geisinger Health System (GHS) is fully prepared and “shovel-ready” to participate as a Regional Medical Center Healthcare Provider Enrollment Center for the Precision Medicine Initiative (PMI). GHS is an integrated healthcare delivery system serving regions in New Jersey and Pennsylvania with a total population of >3M, of which a significant portion resides in small towns and rural areas. This area is densely rural, with significant socioeconomic and health disparities. The population is notable for its very low rate of relocation in/out of the area and the large number of multi-generation families receiving their healthcare in this single integrated system. This stability provides tremendous opportunity for genomics research and implementation – along with a century-old tradition of trust between the system and its patients. In brief, GHS patients represent a generally rural, underserved and lower socio-economic population, an important component of PMI diversity. A pioneer in utilization of EHRs and clinical informatics, GHS adopted Epic in 1996 and now has two decades of longitudinal clinical data on its patients. In addition to Epic, we have a well-established comprehensive enterprise clinical data warehouse, extensive experience extracting clinical information from the EHR and data warehouse and a patient population already partnering with us in precision medicine research. That partnership dates back to 2006 when after extensive engagement with patients and other stakeholders, GHS created a system-wide program for genomics research, the MyCode® Community Health Initiative. MyCode® is designed to recruit participants, regardless of health or disease status, from the health system and now provides an effective framework for precision medicine research and implementation of genomic medicine through a return of results program. To date, MyCode® has enrolled ≥113,000 participants, all of whom have extensive longitudinal EHR data (average of ~13 years) covering primary, specialty, inpatient, and emergency care, as well as geocoding for integration with public databases including environmental data. MyCode® closely mirrors the proposed design of the national PMI cohort including participant engagement; informed consent for broad research use; data sharing and return of results; longitudinal EHR data; collection of additional participant data via diverse mechanisms and engagement strategies (online patient portal, mobile technologies, mail and telephone surveys, and in-person interactions). MyCode® demonstrates GHS’s capabilities in precision medicine. We propose to leverage our MyCode® experience and infrastructure with the additional elements defined by the PMI Steering Committee to create a separate PMI recruitment initiative at GHS. The combination of a large stable population and a long standing trusting relationship makes Geisinger the perfect place for longitudinal studies like the PMI.
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会议论文
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