Using Informatics to Engage Vulnerable Populations in Research: Lessons Learned from the COVID-19 Pandemic

Abstract

Social distancing and 'lockdown' measures introduced by the COVID-19 pandemic created barriers to recruitment and engagement of community members in research activities. Information technology tools were quickly introduced to allow for virtual participation of stakeholders in research. Vulnerable populations, namely communities with limited access to resources or at a higher risk to experience bias or discrimination, were less likely to engage in such virtual research initiatives. Informatics tools have the potential to support these populations, but existing disparities require a careful consideration of engagement strategies. We discuss three case studies of ongoing research projects targeting vulnerable populations and highlight the role of informatics in facilitating engagement. Target populations include family caregivers of hospice patients, low-income older adults and patients with dementia and their families. We describe strategies to overcome unique challenges introduced by the pandemic, and ways to build a more resilient future.