Health Systems Core

项目摘要 大多数痴呆症患者（PWD）在机构外接受护理，这意味着身体，情感， 痴呆症的经济负担不仅由病人承担，而且由他们的照顾者承担。支离破碎的， 复杂的美国医疗保健系统加剧了提供协调的全人护理的挑战， PWD。设计和测试有效、可行的非药物干预措施必须考虑到 卫生保健景观的异质性，这一复杂人群的具体需求，以及环境 在其中提供护理。虽然多种干预措施旨在改善对PWD及其 护理人员已经证明了有效性，很少有被广泛采用，几乎没有正式测试， 健康护理系统（HCS）。反映了许多未回答的问题，在优化护理， PWD，我们的当务之急是缩小干预措施的开发和测试与其后续发展之间的差距。 在现实世界的HCS中采用。因此，要发展强有力的国家能力， 临床试验（ePCT），我们必须利用研究人员和一线临床医生的综合专业知识， 设计确保可复制性、可扩展性和可持续性的干预措施。我们将运用这些专业知识， 解决开展ePCT的独特复杂性，重点是满足残疾人及其 照顾者拟议中的国家老龄问题研究所（NIA）的卫生保健系统（HCS）核心 阿尔茨海默病（AD）/AD相关痴呆（AD/ADRD）HCS合作实验室将聘请来自 综合交付系统，学术医疗中心，疗养院系统，家庭护理公司和 其他社区为基础的供应商，以实现以下具体目标。目标1。建立一个协作， 支持性研究资源，涉及不同的HCS，以支持和促进环境中的研究 残疾人及其照顾者接受护理的地方;目标2。制定、记录和传播特定环境 在PWD中进行ePCT的方法;目标3。促进开展严格的试点研究， 发展奖（CDA）项目，以及NIH资助的针对PWD及其 照顾者影响：成功的HCS核心将与其他AD/ADRD合作实验室核心合作， 团队促进严格的，高质量的研究研究，重点是残疾人及其照顾者，其中 多个卫生保健提供组织参与。结合ePCT的深厚专业知识和第一手资料， 在一系列环境中照顾AD/ADRD人群的知识，HCS核心将成为一个 无与伦比的国家研究资源，以帮助颁布成功的基于HCS的干预措施， 满足残疾人、照顾者和为他们服务的卫生系统的需求。

PROJECT SUMMARY Most persons with dementia (PWD) receive care outside of institutions, meaning that the physical, emotional, and financial burdens of dementia are borne not only by patients, but their caregivers as well. The fragmented, complex US health care system exacerbates the challenge of delivering coordinated, whole-person care for PWD. Designing and testing effective, practicable, non-pharmacological interventions must take into account the heterogeneity of the health care landscape, the specific needs of this complex population, and the context in which care is delivered. Although multiple interventions designed to improve care for PWD and their caregivers have demonstrated efficacy, few have been adopted widely, and virtually none formally tested in functioning health care systems (HCS). Reflecting the many unanswered questions in optimizing care for PWD, our imperative is to close the gap between the development and testing of interventions and their later adoption in real-world HCS. Thus, to develop a robust national capability to support embedded pragmatic clinical trials (ePCT), we must leverage the combined expertise of researchers and front-line clinicians to design interventions that ensure replicability, scalability, and sustainability. We will apply this expertise as we address the unique intricacies of conducting ePCTs focused on meeting the needs of PWD and their caregivers. The Health Care Systems (HCS) Core of the proposed National Institute on Aging (NIA) Alzheimer's disease (AD)/AD-related dementia (AD/ADRD) HCS Collaboratory will engage experts from integrated delivery systems, academic medical centers, nursing home systems, home care companies and other community based providers to accomplish the following Specific Aims. Aim 1. Establish a collaborative, supportive research resource involving diverse HCS in order to support and facilitate research in the settings where PWD and their caregivers receive care; Aim 2. Develop, document, and disseminate setting-specific approaches to conducting ePCTs in PWD; Aim 3. Facilitate the conduct of rigorous pilot studies, Career Development Award (CDA) projects, and NIH-funded ePCTs in diverse care HCS targeting PWD and their caregivers. IMPACT: A successful HCS Core will partner with the other AD/ADRD Collaboratory Cores and Teams to facilitate rigorous, high-quality research studies focused on PWD and their caregivers, in which multiple health care delivery organizations participate. Combining deep expertise in ePCTs and first-hand knowledge of caring for the AD/ADRD population in a range of settings, the HCS Core will become an unparalleled national research resource to help promulgate successful HCS based interventions designed to meet the needs of PWD, caregivers, and health systems that serve them.