A compendium of community engagement responses to the COVID-19 pandemic

Abstract

This version may be subject to change during the production process.

Addressing the challenges of conducting community-engaged research during COVID-19: Rapid development and evaluation of a COVID-19 Research Patient and Community Advisory Board (PCAB)

“…The fact the PCAB was organized at an institutional level, through the CTSI CE&HP Program, further facilitated a more rapid response rather than expecting individual investigators to conduct their own patient and community engagement. The implementation and sustainability of the PCAB add to a growing list of collaborative efforts between CTSA sites and community partners that have responded to the challenges of COVID-19 [15,28,29]. This has included dedicated programs that have listened and responded to community concerns, collected data to describe how COVID-19 • Community members must be equal partners (e.g., not just research participants) and involved earlier in the proposal and study development process.…”

Integrating special and underserved populations in translational research: Environmental scan of adaptive capacity and preparedness of Clinical and Translational Science Award (CTSA) program hubs

“…Data gaps concerning significant disparities in COVID-19 community disease burden were observed and documented from the pandemic start [19][20][21][22]. Eder et al [22] led and analyzed discussions between (and written reports from) Community Engagement hub leaders from eighteen CTSA institutions on their activities pertaining to six key community engagement response themes.…”

“…Data gaps concerning significant disparities in COVID-19 community disease burden were observed and documented from the pandemic start [19][20][21][22]. Eder et al [22] led and analyzed discussions between (and written reports from) Community Engagement hub leaders from eighteen CTSA institutions on their activities pertaining to six key community engagement response themes. Two themes were focused on special populations: collecting data to understand the impact of COVID-19 on distinct communities and groups; and engaging hubs and underrepresented populations in COVID-19 research.…”

“…University of California -LA conducted COVID-19 focus groups with community members experiencing the harshest COVID-19 impact (based on race/ethnicity, age, income). Special COVID-19 related items were also added to the survey on social determinants of health, administered by the University of Minnesota [22]. Similarly, a recent mixed-methods study to ascertain the scale and scope of the COVID-19 pandemic's impact on refugee communities representing 18 countries found that refugee families struggled to adapt to an online learning environment; experienced stigma around communicable diseases as a barrier to accessing testing and treatment; were confused regarding medical systems, lacked trust in technology and privacy concerns; and endured overcrowded living conditions, financial stressors and high emotional toll derived from all the new challenges.…”

“…Adaptable, forward-looking decision-making can only be accomplished when it includes voices of its key stakeholders and community members. Some CTSA institutions have succeeded at integrating community partners in clinical research processes [22] Hardeman et al [33] recognized the need to combat racial health inequities as a fundamentally urgent task of all healthcare systems and learned through the pandemic responses that "systemic change can in fact happen overnight." Decisionmakers of clinical and translational research organizations may adjust their structures, operations, and planning by learning from the five practices identified by the authors for dismantling of structural racism and improving the well-being of the black community:…”