Perceived efficacy, feasibility, and implementation of community engaged research practices in the multi‐site SuperAging Research Initiative
Authors: Rahman‐Filipiak Annalise , Maher Amanda Cook , Okonkwo Ozioma , Amador Gabriella , Bradley Samantha , Eldes Fatima , Engelmeyer Janessa , Finger Elizabeth , Goldstein Felicia C , Hunt Nicole , Lose Sarah R , McIlroy William , Morhardt Darby J. , Nelson Alexis R , Van Ooteghem Karen , Orange Joseph B , Parker Monica W , Roberts Angela C , Timpo Phyllis , Trammell Antoine R , Weintraub Sandra , Rogalski Emily J 
Published: December 2023

Background

Studies demonstrate that community engaged research (CER) supports minority recruitment into Alzheimer’s disease studies. In contrast, few studies have explored whether CER can engage diverse ‘SuperAgers,’ adults age 80+ with superior episodic memory. Within the multi‐site SuperAging Research Initiative, which seeks to recruit 40% Black/African American adults, we assessed current CER strategies, study team perceptions of CER feasibility and effectiveness, and barriers to implementing or sustaining CER.

Method

The five SuperAging sites completed a literature‐informed survey on current CER practices and the perceived feasibility and effectiveness of ten potential strategies.

Results

All sites (100%) have a dedicated CER study team/member, while most (80%) have an ethnoracially representative study team. Responses indicated strong partnerships with community advisors (80%) and organizations (100%), with these techniques rated as highly feasible and effective. Eighty percent of sites provide community education events and find this strategy feasible and effective. In contrast, few sites (40%) publish a newsletter, with variable impressions of its effectiveness and feasibility and lack of expertise creating an implementation barrier. Despite strong perceptions of feasibility and effectiveness, only one site tailors recruitment materials for specific communities due to concerns about expertise and cost. Social media is rarely used as a source of advertising (40%); several sites questioned the feasibility and effectiveness of this technique for SuperAgers, and cited expertise and time as a barrier. Finally, though several sites (60%) see participants during evening hours, few provide early morning (40%) or weekend (20%) appointments, and only one (20%) completes study activities off‐site. Perceived feasibility of these methods was hampered by personnel and time.

Conclusion

SuperAging sites implement a broad range of CER techniques to increase Black/African American representation in the sample. Responses highlighted the perceived importance of diverse study teams with dedicated time for CER and bidirectional communication with the community. Respondents saw flexible study sites/schedules and tailored recruitment materials as highly effective but difficult to accomplish, making them possible targets for future study planning. While personnel, expertise, and finances represent consistent challenges, sites are universally invested in CER. These data will inform future implementation and evaluation of recruitment science of a diverse SuperAging population.