Project Description

Understanding Disease Burden and Outcomes from the Patient’s Perspective Using Disease-Focused Internet Forum Data

Publicly available social media forums, including patient/disease forums such as Inspire, offer focused discussion communities and have seen exponential growth in recent years. In fact, some industry professionals claim that online forums may actually contain richer data for public health and safety-related topics compared to Facebook or Twitter, given that publicly available Facebook data is no longer freely accessible for public health purposes and Twitter data has character limitations.

For two disease areas of interest, rheumatoid arthritis and systemic sclerosis, we hypothesized that Inspire forum data may offer useful information as well as longitudinal insights into disease and patient perspectives from linked discussion threads.

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