Lessons Learned from Research via Private Social Media Groups

Abstract

As research methods evolve to provide a voice to understudied, distributed communities, we explore our experiences running and analyzing Asynchronous Remote Communities (ARC) studies. Our experiences stem from four separate Facebook-based ARC studies with people who experience: rare disease, pregnancy, miscarriage, or HIV. We delve into these studies' methods, and present updated guidelines focused on improved study design, data collection, and analysis plans for ARC studies.