Technical/Data Core

项目摘要-技术数据核心 医疗系统嵌入式实用临床试验(EPCT)，满足痴呆症患者(PWD)的需求 和他们的照顾者(CG)对于发展和传播循证的、非药理学的 干预措施。EPCTS的一个关键要素是使用源自卫生系统工作流程并与之集成的数据 在干预措施的设计、实施和传播方面。是建立国家研究中心的核心 老龄化(NIA)阿尔茨海默病(AD)/AD相关痴呆(AD/ADRD)医疗系统(HCS) 通过协作，技术数据核心(TDC)将开发方法、工具和数据战略，以支持 有效利用电子健康记录、行政数据和其他信息来源 与为其提供服务的母婴保健服务机构合作，加快在残疾儿童及其社区团体中开展ePCT。要做到这一点， 贸发局的核心将进行所需的基础性工作，以建立识别参与者和 衡量成果，为实施这些方法提供技术援助，并监测试点进展情况 提供有关护理地点和地理区域的汇总信息，以帮助选择试点地点和 传播。在此核心开发的方法和工具将在未来的全面范围内具有广泛的适用性 与HCS一起进行的ePCT测试旨在改善残疾患者及其家属的护理和预后的干预措施 CGS。贸发局将由朱莉·拜纳姆博士率领，她是 密歇根大学，研究医疗系统质量、过程和结果的专家 老年人，特别关注AD/ADRD。拜纳姆博士将得到五位杰出高管的支持 委员会成员，他们带来了以下方面的关键专业知识：自然语言处理和信息学、复杂数据 分享AD/ADRD ePCT的数据需求、复杂疾病中的医疗信息系统、 和NIH HCS合作实验室的分布式研究网络。贸发局的宗旨是：目标1：发展 并传播标准化和有效的算法，以从EHR、登记处和 管理数据集(例如，医疗保险报销、最低数据集)及其CGs；目标2：开发和 传播标准化和有效的数据算法，以获取PWD的相关健康结果及其 目标3：为合作实验室试点项目负责人和职业发展提供技术援助 获奖者以及NIA资助的调查人员在残疾人领域开展ePCT；目标4：使人们能够获得 敏感数据的远程飞地(例如，EHR、私人索赔记录)。影响：成功的贸发局至为重要 通过提高参与者识别和结果衡量的效率，使ePCTS成为可能，并提供 支持为试点研究和最终在卫生和社会服务机构中传播ePCT选择场地的信息。 本核心开发的方法和工具将广泛适用于未来进行的全面ePCT 与保健服务一起测试旨在改善残疾患者及其CGs的护理质量和结局的干预措施。

Project Summary – Technical Data Core Health-system embedded pragmatic clinical trials (ePCT) that address the needs of people with dementia (PWD) and their caregivers (CGs) are critical for developing and disseminating evidence-based, non-pharmacological interventions. A key element of ePCTs is to use data derived from and integrated with the health system workflow in the design, conduct, and dissemination of interventions. Central to the establishment of National Institute on Aging (NIA) Alzheimer's disease (AD)/AD-related dementia (AD/ADRD) Healthcare Systems (HCS) Collaboratory, the Technical Data Core (TDC) will develop methods, tools, and data strategies that enable efficient use of electronic health records (EHRs), administrative data and other sources of information to accelerate the conduct of ePCTs in PWD and their CGs in partnership with the HCSs that serve them. To do so, the TDC core will conduct the foundational work needed to establish the methods that identify participants and measure outcomes, provide technical assistance to implement those methods and monitor pilot progress, and provide aggregated information about sites of care and geographic areas to assist in selection of pilot sites and dissemination. The methods and tools developed in this Core will have broad applicability for future full-scale ePCTs conducted with HCS that test interventions aimed at improving the care and outcomes for PWD and their CGs. The TDC will be led Dr. Julie Bynum, Professor of Medicine in Geriatrics and Palliative Care at the University of Michigan, an expert in the study of health system quality, processes and outcomes when caring for older adults, with a specific focus on AD/ADRD. Dr. Bynum will be supported by five exceptional Executive Committee members, who bring critical expertise in: natural language processing and informatics, complex data sharing, experience with data needs of AD/ADRD ePCTs, healthcare information systems in complex illness, and the NIH HCS Collaboratory’s Distributed Research Network. The Aims of the TDC are: Aim 1: To develop and disseminate standardized and valid algorithms to identify and characterize PWD, from EHRs, registries and administrative datasets (e.g., Medicare claims, Minimum Data Set) and their CGs; Aim 2: To develop and disseminate standardized and valid data algorithms that capture relevant health outcomes of PWD and their CGs; Aim 3: To provide technical assistance to Collaboratory pilot project leaders and career development awardees, as well as NIA-funded investigators conducting ePCTs in PWD; and Aim 4: To enable access to remote enclaves of sensitive data (e.g., EHRs, private claims records). IMPACT: A successful TDC is essential to enable ePCTs by improving efficiency of participant identification and outcome measurement, and to provide information that supports selection of sites for pilot studies and for ultimate dissemination of ePCT across HCS. The methods and tools developed in this Core will have broad applicability for future full-scale ePCTs conducted with HCS that test interventions aimed at improving the quality of care and outcomes for PWD and their CGs.