PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health

Abstract

What happens when patients go online to not only discuss health and daily living but to share detailed health data? PatientsLikeMe is an online platform where patients with life-altering conditions share structured information about symptoms, treatments, and outcomes, view individual and aggregated reports of these data, and discuss health and garner support on forums and through private messages. In this case study, we describe the components of this platform and how people with Amyotrophic lateral sclerosis have used the site to manage and improve pulmonary health. A qualitative analysis of forum content containing preset terms reveals patterns in use. As in other online communities, members of PatientsLikeMe offer one another support based on their own personal experience and advise each other on both medical issues and how to improve day-to-day life. Unique to this patient platform, members tailor questions and consults by referencing concrete data displayed for each patient member. PatientsLikeMe adds data into patient investigations on how to improve daily life and long term health outcomes.