All of Us Pennsylvania

我们所有人宾夕法尼亚州

基本信息

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
项目类别：
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

项目摘要

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 (University of Pittsburgh) 的 PA Cares for Us 研究计划 (PA Cares) 匹兹堡医疗中心）是 NIH All of Us (AoU) 的区域医疗中心 (RMC) 注册网站自 2017 年 11 月 13 日起，我们试行了一系列参与方法，推出了 3 种注册策略，并且在 AoU 测试阶段完全注册了 2005 年与我们非常匹配的参与者我们现在将进一步利用最初预测的人口分布。 UPMC 的足迹以及由 NIH 资助的临床和转化科学创建的基础设施我们指导的研究所 (CTSI) 全面招募至少 111,002 名 AoU 参与者，以实现保留队列 ≥93,000 名参与者：  足够的多样性，使 AoU 的百万人口群体能够获得足够的权力来评估我们将利用 UPMC 在以下领域不断扩大的临床业务。在宾夕法尼亚州西部和中部，我们的 CTSI 社区合作伙伴核心重点关注消除健康问题差异，以及我们与利益相关者共同设计的全面 PA Cares 参与计划。我们将利用一些资源来招收成年人，最终招收儿童，包括： o 宾夕法尼亚州西部和中部拥有 37 家 UPMC 医院和超过 600 个服务点 o 23 个 UPMC 老年社区，为超过 2900 名老年居民提供服务 o Hillman 癌症中心以及超过 60 个社区癌症中心网络 o >90 个康复和长期护理设施以及计划中的残疾医院 o 皮特/匹兹堡大学医学中心 (UPMC) 老龄化研究所和合作伙伴组织 o Giant Eagle 药房（宾夕法尼亚州有 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、FOCUS Pittsburgh 和几个拉丁裔密切合作组织 o 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) 和参与伙伴中代表性不足 o 位于农村县的 14 家 UPMC 医院（例如最近收购的 UPMC Altoona、UPMC Bedford）萨斯奎哈纳卫生系统） o 匹兹堡 UPMC 儿童医院（2017 财年：12,333 名住院患者；9,693 名观察患者；146,748 名患者）急诊/快速护理就诊；23,389 次手术；>100 万次门诊就诊） o UPMC 儿童社区儿科网络（>40 个诊所、>200 个提供者、>200,000 名患者） o UPMC Magee 妇女医院（每年超过 11,000 次分娩）  对历史上生物医学领域代表性不足的人群进行有意和定向的过度采样研究使 AoU 有足够的能力进行统计分析，以帮助了解我们将使用新的工具来了解影响这些人群的具体健康状况和差异。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： o Pitt+Me 研究参与者登记处（超过 134,000 名同意的收到研究邀请的参与者基于电子健康记录 (EHR) 数据、人口统计数据和偏好 >9,500 个新登记处；仅过去 2 个月的注册人数） o NIH/NCATS 临床试验 (ACT) 网络的链接 EHR 网络，以针对特定人群团体（到 2019 年，横跨 37 家 UPMC 医院和超过 600 个办公室，并由至少 18 个 AoU RMC 站点进行部署） o TrialSpark（针对特定人群的社交媒体工具） o UPMC Altoona 和 Bedford 医院扩展到 UPMC Susquehanna 和 Pinnacle Health Systems（农村和城市中心 PA）以及 UPMC Northwest、Horizon 和 Hamot 医院（农村和城市）宾夕法尼亚州西北部城市） o 灵活的弹出式参与和注册团队到达联邦社区健康中心合格的健康中心、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。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 多元化的服务区域（图 1） o 人口老龄化稳定，并有纵向记录的采矿、钢铁、化学品、制造业、农业和其他行业 o 由我们的提供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，包含自 2004 年以来收集的全面住院和门诊数据 o CTSI 研究数据仓库，其中包含每位患者的结构化临床数据从 UPMC 的 EHR 系统汇总，包括人口统计、诊断、程序、药物、和实验室测试结果  参与、招聘和实施流程，确保高跟进率和我们的保留计划基于不同人群的可比跟进率。为参与者提供价值的理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（我们采用包容性决策流程来制定和调整方法以满足参与者的需求） o 利用 MyUPMC 健康门户，该门户可用于从超过 540,000 人中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 万名会员进行沟通 o 采用 Wondros 创建的基于以人为本的多媒体参与和保留工具设计方法 o 在 Chartis Group 的指导下采用高效的项目管理（流程管理）