October 3, 2023
A new publication by members of IMPACT’s Engaging Partners Team and Lived Experience Panel, as well as collaborators from the Alzheimer’s Association describes the process and experience of recruiting, selecting and convening the IMPACT Lived Experience Panel (LEP) of people living with dementia and care partners. In the Journal of the American Geriatrics Society, the authors, Antonia V. Bennett PhD, Kyra O’Brien MD, Monica Moreno BS, Kerry Lanigan BS, Katie Maslow MSW, FGSA, Carolyn A. Malone MPH, Laura C. Hanson MD, MPH, Sheryl Zimmerman PhD, Jason Karlawish MD, Emily A. Largent JD, PhD, RN, María P. Aranda PhD, MSW, MPA, Ladson Hinton MD, Brenda P. Nicholson MD, Louise Phillips MD, Sam Fazio PhD, and Gary Epstein-Lubow MD, discuss the LEP collaboration, which provided valuable insights reflecting a broad range of experiences through in-depth discussions of issues related to embedding pragmatic trials in dementia care.
Abstract
Background
The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer’s Disease and Alzheimer’s Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP.