Investigating the Process-Platform Gap: How a Patient Community's Efforts Teach us About the Limits of Social Platforms in Supporting Institutional Processes

Social platforms are often used by communities to spread awareness and advocate for change; such platforms are rarely designed for participation in institutional processes. We call this the process-platform gap: institutional processes require structured, sustained forms of participation that social platforms are not designed to support. How might social platforms evolve to support greater participation in institutional processes? We study this question via a case study of the scientific drug development and regulatory process and how it is influenced by contributions from the Amyotrophic Lateral Sclerosis (ALS) patient community. The ALS community intervenes at multiple stages of the research process with flexible, novel use of current social platforms. Our work focuses on three ways the ALS community uses social platforms to expedite drug development. First, the community directly used general-purpose features--like hashtags and tagging on X--to raise funds through viral campaigns like the Ice Bucket Challenge. Second, patients repurposed self-tracking features--like functional assessment scores on PatientsLikeMe--to run studies for novel drugs. Third, the community uses specialized platforms--like regulations.gov--for focused formal work by submitting public comments that critique and shape the Food and Drug Administration's (FDA) drug development guidelines. One limitation of the community's use of social platforms is the mismatch between social platform designs and institutional workflows, leading to a persistent process-platform gap. This limits the potential for sustained dialogue, collaboration, and significant integration of community-led efforts into institutional decision-making. Our work provides design recommendations to reduce the process-platform gap.