Technical/Data Core

项目摘要-技术数据核心 卫生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）是至关重要的发展和传播循证，非药理学 干预措施。ePCT的一个关键要素是使用来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。建立国家研究所的核心 阿尔茨海默病（AD）/AD相关痴呆（AD/ADRD）医疗保健系统（HCS） 技术数据核心（TDC）将开发方法、工具和数据战略， 有效利用电子健康记录（EHR）、行政数据和其他信息来源， 与为残疾人服务的HCS合作，加快在残疾人及其社区团体中开展ePCT。为此， 贸发局的核心将进行必要的基础工作，以确定确定参与者的方法， 衡量成果，为实施这些方法提供技术援助，并监测试点进展， 提供关于护理地点和地理区域的汇总信息，以帮助选择试点地点， 传播。本核心中开发的方法和工具将广泛适用于未来的全面评估。 与HCS一起进行的ePCT测试旨在改善PWD及其患者的护理和结局的干预措施。 CG贸发局将领导朱莉拜纳姆博士，在老年医学和姑息治疗医学教授在 密歇根大学，在卫生系统的质量，过程和结果的研究专家，当照顾 老年人，特别关注AD/ADRD。拜纳姆博士将得到五位杰出的执行官的支持。 委员会成员，他们在以下方面具有关键的专业知识：自然语言处理和信息学，复杂数据 分享AD/ADRD ePCT数据需求的经验，复杂疾病的医疗保健信息系统， 以及NIH HCS合作实验室的分布式研究网络。贸发局的目标是：目标1：发展 并传播标准化和有效的算法，以识别和表征PWD，从EHR，注册表和 管理数据集（例如，医疗保险索赔，最小数据集）及其CG;目标2：制定和 传播标准化和有效的数据算法，以获取残疾人的相关健康结果及其 协商小组;目标3：向合作实验室试点项目领导人和职业发展提供技术援助 获奖者，以及NIA资助的研究人员在残疾人中进行ePCT;以及目标4： 敏感数据的远程飞地（例如，EHR，私人索赔记录）。影响：成功的TDC至关重要 通过提高参与者识别和结果测量的效率来实现ePCT，并提供 支持选择试点研究和最终在整个HCS传播ePCT的研究中心的信息。 本核心文件中开发的方法和工具将广泛适用于未来进行的全面ePCT 与HCS一起测试旨在改善PWD及其CG的护理质量和结果的干预措施。

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.