All of Us Pennsylvania

匹兹堡大学（皮特）/UPMC（匹兹堡大学）的PA关心我们研究计划（PA关心） 匹兹堡医学中心）是NIH All of Us（AoU）的区域医学中心（RMC）注册网站 精准医疗倡议。截至2017年11月13日，我们试行了一系列参与方法， 3种招生策略，并在AoU测试阶段完全招收了2005名与我们的课程非常匹配的参与者 最初预测的人口分布。我们现在将进一步利用不断扩大的临床 UPMC的足迹和我们的NIH资助的临床和转化科学创建的基础设施 研究所（CTSI），我们指导，完全招募至少111，002 AoU参与者，以实现保留队列 ≥ 93，000名受试者中： * 足够的多样性，使AoU的百万人队列能够获得足够的权力， 从婴儿到老年的常见疾病。我们将利用UPMC不断扩大的临床业务， 宾夕法尼亚州西部和中部，我们的CTSI社区合作伙伴核心的重点是消除健康 差异，以及我们与利益相关者共同设计的全面PA Cares参与计划。 我们将利用的资源的例子来招收成人，并最终儿童，包括： 37家UPMC医院和宾夕法尼亚州西部和中部的600多个服务点 23个UPMC老年社区，为超过2900名老年居民提供服务 希尔曼癌症中心加上超过60个社区癌症中心的网络 o超过90个康复和长期护理设施，加上一个计划中的残疾人医院 皮特/UPMC老龄化研究所和伙伴组织 Giant Eagle Pharmacy（宾夕法尼亚州219个地点） o超过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，匹兹堡焦点和几个拉丁美洲人密切合作， 组织 PA Cares利益相关者咨询委员会（SAB）代表不同群体，包括 在生物医学研究（UBR）和参与伙伴中代表不足 o 14家设在农村县的UPMC医院（例如，UPMC阿尔图纳，UPMC贝德福德，最近收购了 Susquehanna卫生系统） 匹兹堡UPMC儿童医院（2017财年：住院12，333人;观察9，693人;住院146，748人） 急诊/快速护理就诊; 23，389例手术;超过100万次门诊就诊） UPMC儿童社区儿科网络（>40个诊所，>200个提供者，> 200 000名患者） UPMC Magee妇女医院（每年分娩11 000次以上） 对历史上在生物医学领域代表性不足的人群进行有意和定向的过度抽样 研究，使AoU有足够的力量进行统计分析，以帮助了解 影响这些人口群体的具体健康状况和差异。我们将使用新的工具， 设计思维方法、有针对性的消息传递和灵活的PA Cares注册方法，例如： Pitt+Me研究参与者登记处（> 134，000名同意接受研究邀请的参与者） 基于电子健康记录（EHR）数据、人口统计学和偏好; > 9，500个新注册表 仅过去2个月的入组者） o NIH/NCATS临床试验应计费用（ACT）网络链接的EHR，以针对特定人口 集团（到2019年，在37家UPMC医院和>600个办事处以及至少18个AoU RMC站点部署） TrialSpark（针对特定人群的社交媒体工具） o UPMC Altoona和贝德福德医院，并扩展到UPMC Susquehanna和Pinnacle Health 系统（农村和城市中心PA）和UPMC西北，地平线和Hamot医院（农村和城市） 西北部城市（PA） o灵活的弹出式参与和注册团队，以达到社区卫生中心，联邦 合格的健康中心、免费诊所和其他照顾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数据，包括： o UPMC多元化的服务区（图1） o稳定的老龄人口，纵向记录暴露于采矿，钢铁，化学， 制造业、农业和其他行业 o由我们的供应商提供服务的大型门诺派和阿米什社区 通过EHR提供广泛的临床和实验室信息，不限于任何单一疾病： o UPMC EHR，其中包含自2004年以来收集的全面的住院和门诊数据 o CTSI Research Data Warehouse，包含已接受 从UPMC的EHR系统汇总，包括人口统计学，诊断，程序，药物， 和实验室检测结果 * 参与、征聘和执行过程，确保高后续率， 不同人群的随访率相当。我们的保留计划基于 为参与者提供价值的概念，并利用我们以前的经验。我们将： o部署我们的Pitt+Me招聘框架，以便与PA Cares参与者进行邮件/电子邮件通信 o以我们的SAB为指导（我们采用包容性的决策过程来制定和调整方法 满足与会者的需要） o利用MyUPMC健康门户网站，可用于从> 540，000人中进行参与和招募 患者用户，并提供有关AoU返回的结果类型的一般教育 o利用UPMC健康计划与其320万会员的沟通 o采用Wondros基于以人为本的 设计方法 o在Chartis集团的指导下采用高效的项目管理（流程管理）

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)