Health care for the over 5 million Americans living with Alzheimer’s disease remains fragmented and poorly organized. Unlike other complex diseases with high impact on care delivery (e.g., diabetes), there is no widely accepted standard of care for dementia. Moreover, several evidence-based care models exist, but none has been widely adopted, resulting in crisis-driven care that can have devastating effects on health and social outcomes. Broad implementation could change this dynamic. The Twin Cities Consortium for Alzheimer’s Research (T-CAR), a unique group of researchers, scientists, clinicians, and advocacy groups across Minnesota, seeks to develop a community-practice-based research agenda grounded in patient-, person-, and population-centered thinking.
Our goal is to expand T-CAR to form a committed team inclusive of patients and caregivers, front-line clinicians, health system business administrators and leaders, and government and community organizations, who will work toward design and submission of a patient-centered CER proposal, in two to three years’ time. Our three primary project milestones are to: (1) develop and strengthen partnerships with key stakeholders and leverage these relationships to engage new groups through a series of semi-structured meetings and key informant interviews; (2) build infrastructure to support meaningful stakeholder engagement, through an explicit communications plan, effective workgroup management, and formation of a representative 20-member advisory council; and (3) elicit stakeholder perspectives on key healthcare issues and build common knowledge from which to generate an initial set of CER ideas using evidence around priority themes that emerge from our engagement process, including a one-day advisory council retreat.