Abstract – External Innovative Network (Network) Core – Core D Sustained advancement in the field of ADRD economics and health services research requires engaging diverse audiences from within and outside of academics. ADRD is profoundly disabling, and, with disease progression, the size, complexity, and importance of care networks increase, leading to reliance on both family caregivers and paid direct-care workers – i.e., ‘Shared Care.’ Yet, both groups are largely invisible in formal systems of care delivery, and the scientific literature to date has most often examined them in isolation. Furthermore, eliciting input and perspectives of individuals with lived experiences who are the intended “end-users” of research outcomes can maximize the relevance and impact of research, especially when they are integrally involved in research conceptualization, design, and interpretation. The goal of the External Innovative Network (Network) Core in this HEADS Center renewal is to develop innovative research networks and resources that support population-based science focused on the Center themes that extend beyond Hopkins to amplify the reach and impact of Center activities. The Network Core will achieve this goal by pursuing two Specific Aims that interrelate with and enhance the overall Center Aims. AIM 1: To develop a new interdisciplinary national Shared Care Research Network to advance and expand the field by bringing together researchers, advocates, and practitioners with expertise on 1) family/unpaid care and 2) paid direct care to persons living with ADRD. The Shared Care Research Network will engage researchers, advocates, and practitioners to advance the science for developing innovative strategies that target collaborations between family caregivers and direct care workers. AIM 2: To assemble and regularly convene a Lived Experience Panel (LEP) of persons from outside academia who are living with or caring for someone affected by ADRD as a new research resource to expand the capacity and impact of HEADS Center research. The LEP will comprise 10-12 members and meet bi-monthly to provide ongoing input to HEADS Center activities. Developing innovative and interdisciplinaryshared-care and lived-experience research networks and resources will amplify the reach and impact of population-based science focused on understanding and addressing ADRD care needs and economic consequences.
Abstract – Program Development (Pilot) Core – Core B The goal of the Johns Hopkins’ Economics of Alzheimer’s Disease & Services (HEADS) Center Program Development (Pilot) Core is to nurture emerging scholars and established investigators pursuing innovation pilots, cultivate novel and high-impact studies, and contribute to the HEADS Center scientific community. In the next project period, the Pilot Core will cultivate new and innovative lines of research through soliciting, selecting, and supporting high-impact Emerging Scholar and Innovation Pilot Projects, launching an accompanying Emerging Scholars Mentorship Program, and integrating Pilot PIs within the broader Center. HEADS Center Pilot studies will address theory-driven analyses to generate and/or test hypotheses or conduct exploratory studies to develop and test new methods. At least 12 Pilots will be awarded to Emerging Investigators throughout the project period. To meet its goal, the HEADS Pilot Core has the following three Specific Aims: AIM 1. To execute a structured process to solicit, review, and fund promising Emerging Scholar Pilot Projects and Innovation Pilot Projects that identify, quantify, and address challenges posed by ADRD aligned with HEADS Center research themes. AIM 2. To support successful execution of all funded Pilot studies by (a) providing oversight and individualized support (e.g., project management, budgeting, data security, contingency planning) to maximize the rigor and timely completion of Pilot studies; and (b) ensuring Pilot PIs are integrated within the overall HEADS Center and connected to Center resources and Cores (Admin Core, C&D Core, Network Core, and RDEC). AIM 3: To implement the HEADS Emerging Scholars Mentorship Program to train and mentor Emerging Scholars through a constructive process of pilot research, culminating in submission of an R-Series or K-Series proposal within 2 years of pilot award. We propose three new and two continuing Year 6 pilot projects from clinician scientists, services researchers, and economists, all of whom are early-stage or new investigators whose research addresses high-priority evidence gaps in alignment with our HEADS Center’s research themes and science that addresses the disproportionate distribution of health, focusing on priority populations experiencing higher burden of ADRD.
