Mapping the collective wisdom of online rare disease communities: The Pipa project     

Published on April 20, 2023 – Annemiek Linn has received an NWO-SX grant to collect, bundle, and analyze knowledge on rare diseases on social media by developing an open-source algorithm. This project contributes to knowledge of rare diseases and allows individuals to understand better and manage their rare diseases.

Worldwide, a billion individuals are affected by some type of rare disease. Because of a lack of knowledge among physicians about these rare diseases, individuals turn to social media to engage with other individuals who have the same disease. The more knowledge they share on these platforms, the more value they create. This collective wisdom not only includes important clinical information (for instance about how the disease typically progresses) but also patient-centric information (what matters to the patient).

This project relies on the assumption that collective wisdom about rare diseases can yield clinical insights well beyond what is known from the medical literature. Because of a lack of funding and the geographically dispersed patient group, research is currently not able to collect, bundle, and analyze this data in a (cost-)effective way. This project aims to develop an open-source algorithm that maps the collective wisdom of rare diseases shared on social media. In doing so, Annemiek Linn will use a case study of the rare disease FOXP1, and the posts of one of the most used social media for rare diseases: Facebook. The algorithm developed in this project will serve as a blueprint to map the collective wisdom of other rare diseases shared on Facebook. The data obtained can be used to inform patients, caregivers, and physicians, steer future epidemiological analyses, and improve treatment plans.