Distributed knowledge in an online patient support community: Authority and discovery

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressively debilitating neurodegenerative condition that occurs in adulthood and targets the motor neurons. Social support is crucial to the well‐being and quality of life of people with unpredictable and incurable diseases such as ALS. Members of the PatientsLikeMe (PLM) ALS online support community share social support but also exchange and build distributed knowledge within their discussion forum. This qualitative analysis of 1,000 posts from the PLM ALS online discussion examines the social support within the PLM ALS online community and explores ways community members share and build knowledge. The analysis responds to 3 research questions: RQ1: How and why is knowledge shared among the distributed participants in the PLM‐ALS threaded discussion forum?; RQ2: How do the participants in the PLM‐ALS threaded discussion forum work together to discover knowledge about treatments and to keep knowledge discovered over time?; and RQ3: How do participants in the PLM‐ALS forum co‐create and treat authoritative knowledge from multiple sources including the medical literature, healthcare professionals, lived experiences of patients and “other” sources of information such as lay literature and alternative health providers? The findings have implications for supporting knowledge sharing and discovery in addition to social support for patients.