A Comprehensive, Community‐Engaged Recruitment Strategy to Increase Minority Representation in New IDEAS – an Amyloid Imaging Study

Abstract

AbstractBackgroundAlthough Black and Hispanic/Latino people have higher rates of clinical Alzheimer disease (AD), evidence indicates lower proportions and odds of positive amyloid positron emission tomography (PET). This may indicate differences in etiology of cognitive impairment, which has implications for prevention and treatment (ie, anti‐amyloid treatments). Unfortunately, Black and Hispanic/Latino people are underrepresented in AD research.MethodTo evaluate amyloid PET in a diverse sample, we designed culturally‐informed, community‐engaged recruitment strategies for New IDEAS (Imaging Dementia—Evidence for Amyloid Scanning), an observational, open‐label, longitudinal cohort study of beta‐amyloid PET. New IDEAS intends to recruit 7,000 U.S. Medicare beneficiaries with mild cognitive impairment (MCI) or dementia including 2,000 Black/African American and 2,000 Latino/Hispanic individuals. To ensure diversity, we developed a comprehensive recruitment strategy using a diverse, culturally‐trained staff that includes:• Identifying Dementia Specialists experienced recruiting minorities• Embedding high‐impact community engagement in select regions• Increasing capacity of specialists and PET facilities to engage minorities• Increasing pipeline of referrals to Dementia Specialists• Creating a culturally‐informed awareness campaignResultNew IDEAS has enrolled 4,524 participants including 954 (21.1%) Black/African American, and 842 (18.6%) Hispanic/Latinx. Median age is 76 years; 54% are female. More Black/African American (46.6%) and Hispanic/Latinx (42.6%) participants had a dementia diagnosis compared to the overall cohort (33.9%). More Black/African American (37.4%) and Hispanic/Latinx (37%) participants were enrolled in Medicare Advantage compared to the overall cohort (19.5%).During implementation, we encountered additional barriers to minority participation including: dementia specialists and PET facilities located greater distance from minority neighborhoods, lack of transportation to visits, fewer academic medical sites registered, concerns about co‐pays, and dementia specialists not accepting new patients. New strategies are being implemented to address some of barriers including coverage of co‐pays and assistance with transportation.ConclusionNew IDEAS has enrolled more Black/African American and Hispanic/Latinx participants than any amyloid PET study published to date. Despite some success with minority enrollment, recruitment has been hampered by underlying structural barriers such as lack of access to dementia care in minority communities and higher Medicare Advantage rates. Additional resources and policy changes are needed to allow more equitable access to research and dementia care.