Engaging diverse populations in aging research during the COVID-19 pandemic: Lessons learned from four National Institutes of Health funded-Centers

Abstract

BackgroundThe COVID-19 pandemic’s impact on our personal and professional lives required a rapid adaptation to the evolving health crisis and accumulating social stresses. Established measures to reduce the spread of infection and potential death had a direct effect on ongoing research that involved older adults and underrepresented racial/ethnic groups. Although important to preserve public health, these measures risk further isolation of vulnerable research participant populations and threatened established community partnerships. To address the social and research challenges evolving from the COVID-19 pandemic, four National Institutes of Health funded-Centers that engage with community members to enhance research and advance the science of aging came together to learn from each other’s efforts, approaches, and communication with community partners.MethodsMonthly meetings served as a venue to discuss the challenges of engagement with research participants and support community partners during the pandemic. The developed learning community also contributed to recognize and address research staff stress and isolation. We describe how these conversations led our Centers to address unprecedented challenges and sustain community engagement within diverse populations, especially Black/African Americans, Latinos, Middle Eastern/Arab Americans and the oldest-old.ResultsThe exchange of information resulted in maintaining long standing community relationships and partnerships in the face of the uncertainties generated by the pandemic. The strategies included adapting education programs to reduce risk of infection, recognizing symptoms, promoting vaccination and understanding of the effect of COVID-19 to the brain. Different strategies were used to address the effects of isolation and maintain community engagement. Although new research participant enrollment was a challenge, telephone and virtual visits allowed research participants to remain active in research. Community members participation in virtual learning events was variable, ranging from a dozen to hundreds of participants. Invitations to organize panels about newly developed topics indicated the need for information from trusted sources.ConclusionIn sum, the COVID-19 pandemic re - directed all four Centers’ commitment to community service led to developing strategies for social support, which will potentially contribute to transforming public perceptions about research and researchers.

Community engagement strategies for population health research with culturally diverse adults

“…However, the effectiveness of using CHW-led engagement was extremely diminished during the COVID-19 pandemic, forcing a nationwide refocusing of outreach approaches when engaging diverse populations. For example, community engagement center leaders throughout the United States used the opportunity to build capacity through CAB engagement [ 11 ] and COVID-19-related research [ 12 , 13 ] as ways to maintain community trust and involvement.…”

“…One substantial shift is how CEnR strategies were used to recruit culturally and racially diverse older adults into health research studies during the height of the COVID-19 global pandemic that halted CHW-led, community-wide, face-to-face engagement. Vega and colleagues [ 13 ] report that although enrolling new participants into studies was challenging, participant-reconnection campaigns were launched to engage existing study participants, contributing to research continuity and community connection. However, FSRAS was planned in 2019 and officially began promotion and enrollment of AA, CN, and H/L adults into its first study conducted in March 2020, resulting in 100% of recruitment and new enrollment for FSRAS being conducted as the devastating impact of COVID-19 began to become increasingly evident.…”

Strengths, challenges, and strategies for implementing pragmatic multicenter randomized controlled trials (RCTs): example of the Personalized Citizen Assistance for Social Participation (APIC) trial

“…By evaluating the effectiveness of interventions rather than their efficacy under controlled experimental conditions, pragmatic RCTs are very valuable for sustaining real-world implementation while being more sensitive to societal constraints [ 26 ]. Recently, many pragmatic and multicenter RCTs had to be delayed or even terminated after the onset of the pandemic to ensure the safety of participants and to prioritize research on the prevention and treatment of COVID-19 [ 27 – 30 ]. Because of the unpredictable global situation, governments often advocated social distancing as a public health measure to prevent or slow the spread of the disease [ 29 ].…”