All of Us Pennsylvania

我们所有人宾夕法尼亚州

• 批准号: 10327863
• 负责人: Oscar C. Marroquin
• 金额: $ 1200万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-02-08 至 2023-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10327863
• 关键词: Adult; Affect; Aging; Agriculture; Amish; Biomedical Research; Cancer Center; Caring; Catchment Area; Chemicals; Child; Clinic; Clinical; Clinical Data; Clinical Sciences; Clinical Trials Network; Collaborations; Communication; Communities; Community Services; Consent; Data; Decision Making; Diagnosis; Disease; Eagles; Education; Elderly; Electronic Health Record; Electronic Mail; Emergency Situation; Enrollment; Ensure; Environmental Exposure; Evaluation; Exposure to; Federally Qualified Health Center; Funding; Genetic; Group Processes; Health; Health Planning Organizations; Health care facility; Health system; Hospitals; Human; Industry; Infrastructure; Inpatients; Institutes; Laboratories; Latino; Life Style; Link; Location; Long-Term Care; Medical center; Mennonite; Methods; Mining; Multimedia; Neighborhood Health Center; Operative Surgical Procedures; Outpatients; Participant; Patients; Pediatric Hospitals; Pediatrics; Pennsylvania; Persons; Pharmaceutical Preparations; Pharmacy facility; Phase; Population; Population Group; Population Heterogeneity; Population Research; Precision Medicine Initiative; Procedures; Process; Provider; Registries; Rehabilitation therapy; Research; Research Institute; Resources; Rural; Sampling; Services; Site; Statistical Data Interpretation; Steel; Structure; System; Test Result; Thinking; Translational Research; United States National Institutes of Health; Universities; Visit; Woman; aging population; base; cohort; community organizations; data warehouse; demographics; design; dietary; disability; experience; follow-up; health disparity; human old age (65+); implementation process; infancy; medical specialties; member; novel; operation; preference; programs; recruit; rural counties; social media; tool

The PA Cares for Us Research Program (PA Cares) at the University of Pittsburgh (Pitt)/UPMC (University of Pittsburgh Medical Center) is a regional medical center (RMC) enrollment site for the NIH All of Us (AoU) Precision Medicine Initiative. As of November 13, 2017, we piloted an array of engagement methods, launched 3 enrollment strategies, and during the AoU beta phase fully enrolled 2005 participants who closely match our originally projected demographic distribution. We will now further leverage the continually expanding clinical footprint of UPMC and the infrastructure created by our NIH-funded Clinical and Translational Science Institute (CTSI), which we direct, to fully enroll at least 111,002 AoU participants to achieve a retained cohort of ≥93,000 participants with:  Sufficient diversity to enable AoU’s million person cohort to achieve adequate power for evaluation of common disorders from infancy to old age. We will leverage UPMC’s expanding clinical operations in western and central Pennsylvania, our CTSI Community PARTners Core’s focus on eliminating health disparities, and our comprehensive PA Cares engagement plan that we designed with our stakeholders. Examples of resources that we will leverage to enroll adults, and eventually children, include: o 37 UPMC hospitals and >600 points of service across western and central Pennsylvania o 23 UPMC Senior Communities serving >2900 older adult residents o Hillman Cancer Center plus a network of >60 community cancer centers o >90 rehabilitation and long-term care facilities plus a planned disability hospital o Pitt/UPMC Aging Institute and partner organizations o Giant Eagle Pharmacy (219 locations throughout Pennsylvania) o >150 community organizations actively partnering with the CTSI Community PARTners Core, including close collaborations with the Urban League of Greater Pittsburgh, FOCUS Pittsburgh, and several Latino organizations o PA Cares Stakeholder Advisory Board (SAB) representing diverse groups, including those underrepresented in biomedical research (UBR), and participant partners o 14 UPMC hospitals located in rural counties (e.g., UPMC Altoona, UPMC Bedford, recently acquired Susquehanna Health System) o UPMC Children’s Hospital of Pittsburgh (FY17: 12,333 inpatient stays; 9,693 observation stays; 146,748 emergency/express care visits; 23,389 surgeries; >1M outpatient visits) o UPMC Children’s Community Pediatrics network (>40 practices, >200 providers, >200,000 patients) o UPMC Magee Women’s Hospital (>11,000 deliveries annually)  Intentional and directed over-sampling of populations historically underrepresented in biomedical research to enable AoU to have sufficient power for statistical analyses in order to help understand the specific health conditions and disparities affecting these population groups. We will use novel tools, design thinking approaches, targeted messaging, and nimble PA Cares enrollment methods, such as: o Pitt+Me Research Participant Registry (>134,000 consented participants who receive study invitations based on electronic health record (EHR) data, demographics, and preferences; >9,500 new Registry enrollees in past 2 months alone) o NIH/NCATS Accrual to Clinical Trials (ACT) network of linked EHRs to target specific demographic groups (across 37 UPMC hospitals & >600 offices and deployment by at least 18 AoU RMC sites by 2019) o TrialSpark (social media tool for targeting specific demographics) o UPMC Altoona and Bedford Hospitals with expansion to UPMC Susquehanna and Pinnacle Health Systems (rural and urban central PA) and UPMC Northwest, Horizon, and Hamot Hospitals (rural and urban northwestern PA) o Nimble pop-up engagement and enrollment teams to reach Community Health Centers, Federally Qualified Health Centers, Free Clinics, and other specialty care venues that care for UBR populations  A broad range of genetic backgrounds, dietary, lifestyle, and environmental exposure assessments. We will capitalize on the demographics of western and central Pennsylvania, including: o UPMC’s diverse catchment area (Figure 1) o Stable aging population with longitudinally documented exposure to mining, steel, chemical, manufacturing, agriculture, and other industries o Large Mennonite and Amish communities serviced by our providers  A broad array of clinical and laboratory information via EHR, not limited to any single disease through: o UPMC EHR, which contains comprehensive in- and outpatient data collected since 2004 o CTSI Research Data Warehouse, which comprises structured clinical data for each patient that has been aggregated from UPMC’s EHR systems and includes demographics, diagnoses, procedures, medications, and laboratory test results  An engagement, recruitment and implementation process that ensures a high follow-up rate and comparable follow up rates across diverse population groups. Our retention plans are based on the concept of providing value to participants and leverages our previous experiences. We will: o Deploy our Pitt+Me recruitment framework for mail/email communications with PA Cares participants o Be guided by our SAB (we embrace an inclusive decision-making process to develop and adjust methods to meet participants’ needs) o Leverage the MyUPMC health portal, which can be used to engage and recruit from among >540,000 patient users and provide general education about types of results returned by AoU o Leverage UPMC Health Plan communications with its 3.2 million members o Employ multi-media engagement and retention tools created by Wondros based on a human-centered design approach o Employ efficient project management with guidance from The Chartis Group (process management)

匹兹堡大学（PITT）/UPMC的PA CARES CARES for US研究计划（PA CARES）（大学 匹兹堡医疗中心）是我们所有人的NIH（aou）的区域医疗中心（RMC）入学地点 精密医学倡议。截至2017年11月13日，我们试行了一系列订婚方法 3种入学策略，以及在AOU Beta阶段，完全注册了2005年的参与者，这些参与者与我们的 最初预测的人口统计分布。现在，我们将进一步利用不断扩大的临床 UPMC的足迹和我们NIH资助的临床和转化科学创建的基础设施 我们指示的研究所（CTSI）至少注册了111,002个AOU参与者以实现保留的队列 ≥93,000名参与者： 足够的多样性使AOU的百万人类队列获得足够的权力来评估 从婴儿期到老年的常见疾病。我们将利用UPMC不断扩大的临床操作 我们的CTSI社区合作伙伴Core对消除健康的关注 差距以及我们与利益相关者设计的全面关心参与计划。 我们将利用成年人并最终儿童的资源示例包括： O 37 UPMC医院和宾夕法尼亚州西部和中部的600点服务点 O 23 UPMC高级社区> 2900名老年居民 O Hillman Cancer Center以及一个> 60个社区癌症中心的网络 o> 90康复和长期护理设施以及计划中的残疾医院 o PITT/UPMC老化研究所和合作伙伴组织 o巨人鹰药（宾夕法尼亚州的219个地点） o> 150个社区组织积极与CTSI社区合作伙伴核心合作，包括 与大匹兹堡城市联盟，匹兹堡和几个拉丁裔的城市联盟密切合作 组织 o PA关心代表潜水团体的利益相关者顾问委员会（SAB），包括 生物医学研究（UBR）和参与伙伴的代表性不足 O 14位位于农村县的UPMC医院（例如，UPMC Altoona，UPMC Bedford，最近被收购 Susquehanna卫生系统） o匹兹堡UPMC儿童医院（17财年：12,333住院住院； 9,693观察； 146,748 紧急/快速护理访问； 23,389个手术； > 1m门诊就诊） o UPMC儿童社区儿科网络（> 40个实践，> 200个提供者，> 20万名患者） o UPMC Magee妇女医院（每年> 11,000送货） 在生物医学中，有意和定向人口的过度采样在历史上不足 研究以使AOU拥有足够的统计分析能力，以帮助了解 特定的健康状况和影响这些人群群体的差异。我们将使用新颖的工具 设计思维方法，有针对性的消息传递和敏捷的PA关心注册方法，例如： o pitt+我的研究参与者注册表（> 134,000名同意的参与者接受学习邀请 基于电子健康记录（EHR）数据，人口统计和偏好； > 9,500个新注册表 仅在过去两个月就注册） o nih/ncats应计入临床试验（ACT）网络的链接EHR网络，以靶向特定的人群 组（在2019年至少18个AOU RMC站点到37家UPMC医院和> 600个办公室和部署） O试验器（用于针对特定人口统计的社交媒体工具） o UPMC Altoona和Bedford Hospitals扩展到UPMC Susquehanna和Pinnacle Health 系统（农村和城市中部宾夕法尼亚州）和UPMC西北，地平线和Hamot医院（农村和农村 城市西北宾夕法尼亚州） o敏捷的弹出式订婚和入学团队，以达到社区卫生中心，联邦政府 合格的保健中心，免费诊所和其他护理UBR人群的专业护理场所 广泛的遗传背景，饮食，生活方式和环境暴露评估。我们 将利用宾夕法尼亚州西部和中部的人口统计信息，包括： o UPMC的潜水集水区（图1） o稳定的衰老人口，纵向记录了采矿，钢，化学， 制造业，农业和其他行业 o大型门诺派和阿米什人社区由我们的提供商服务 通过EHR有一系列广泛的临床和实验室信息，不仅限于任何单一疾病： o UPMC EHR，其中包含自2004年以来收集的全面的内科和门诊数据 o CTSI研究数据仓库，其中包括每个患者的结构化临床数据 由UPMC的EHR系统汇总，包括人口统计学，诊断，程序，药物， 和实验室测试结果 参与，招聘和实施过程，可确保高度随访率和 潜水员群体之间的可比随访率。我们的保留计划是基于 为参与者提供价值并利用我们以前的经验的概念。我们将： o与PA Cares参与者一起部署我们的Pitt+ME招聘框架进行邮件/电子邮件通信 o受我们的SAB的指导（我们拥护一个包容性的决策过程来开发和调整方法 满足参与者的需求） o利用MyUPMC健康门户网站，可用于从> 540,000中参与和招募 患者用户并提供有关AOU返回结果类型的通识教育 o利用其320万会员的UPMC健康计划通信 o采用Wondros创建的多媒体参与和保留工具，以人为本 设计方法 o在Chartis Group（流程管理）的指导下采用有效的项目管理