Health Systems Core

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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.