External Innovative Network Core

Johns Hopkins University, Baltimore MD

Investigators

Linked publications & trials

Abstract

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.