Boot camp translation of Alzheimer’s disease and the Engaging Communities of Hispanics for Aging Research (ECHAR) Network

Abstract

AbstractBackgroundHispanics/Latinos (H/Ls), the largest ethnic minority in the U.S., are 50% likelier than non‐Hispanic whites to develop Alzheimer’s disease‐related dementias (ADRD). Despite comprising 18% of the U.S. population, H/Ls represent less than 1% of participants in NIH‐funded clinical trials and less than 8% of NIH AD Research Centers, greatly limiting understanding of underlying causes of disparities. However, health literacy gaps may impact research participation. We introduce here the Engaging Communities of Hispanics for Aging Research (ECHAR) Network. The overall objective of this collaborative, transdisciplinary network is to engage, educate, and motivate H/L community members for participation in ADRD research by addressing ADRD‐related communication through use of a novel community‐based participatory method – Boot Camp Translation (BCT).MethodBCT is a manualized, robust six‐to‐eight‐month program designed to translate medical jargon into action‐based messages that are more effectively consumed by local communities. It fosters engagement between clinical experts and patients as well as community members with the overarching goal of helping to make medical evidence and guidelines locally relevant and accessible. We completed the first known BCT on ADRD with 15 community stakeholders in the Denver metropolitan area over 6 months.ResultWe had 0% attrition. Group members saw a significant (p<0.05) improvement in both subjective understanding and objective knowledge of ADRD. Four main themes were perceived as most relevant to their community: the importance of brain health, a call for self‐advocacy in medical settings and with providers, the need to learn more through research, and awareness of basic targets of cognitive changes that may be associated with ADRD. These themes were structured into a dissemination plan that included both printed and digital materials in addition to oral presentations shared with community organizations.ConclusionThe ECHAR Network aims to expand these initial findings. By the end of this project, ECHAR will have: (1) established and trained community advisory committees on ADRD in at least three cities; (2) developed key, culturally‐informed, ADRD‐related materials as well as dissemination and evaluation strategies for H/L recruitment; and (3) developed sustainable research infrastructure to enhance outreach by supporting health disparities investigators and pilot grants.