Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions

• Published in: Journal of the American Geriatrics Society (JAGS) 2024-01, Vol.72 (1), p.139-148
• Main Authors: Bennett, Antonia V., O'Brien, Kyra, Moreno, Monica, Lanigan, Kerry, Maslow, Katie, Malone, Carolyn A., Hanson, Laura C., Zimmerman, Sheryl, Karlawish, Jason, Largent, Emily A., Aranda, María P., Hinton, Ladson, Nicholson, Brenda P., Phillips, Louise, Fazio, Sam, Epstein‐Lubow, Gary
• Format: Article
• Language: English
• Subjects: Aging; Alzheimer Disease - complications; Alzheimer Disease - therapy; Alzheimer's disease; Alzheimer's Disease and Related Dementias; Caregivers; Clinical trials; Cognitive ability; Cognitive Dysfunction - complications; Dementia; Dementia disorders; Disease Progression; embedded pragmatic clinical trials; engagement; Ethnicity; Female; Humans; Lived Experience Panel; Male; Neurodegenerative diseases; Older people; Sexual behavior
• ISSN: 0002-8614; 1532-5415
• DOI: 10.1111/jgs.18621

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. Methods The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early‐stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid‐to‐late stage dementia. The 11‐member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. Results LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. Conclusions The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.