Date of Award

3-27-2019

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Information Science

First Advisor

Nitin Agarwal

Abstract

Idiopathic pulmonary fibrosis (IPF) is an interstitial lung disease which affects an estimated five million patients worldwide. Characterized by progressive respiratory failure and a median patient survival time of three to five years, this disease affects 150,000 patients in the United States (US) and results in 40,000 deaths annually. While the US mortality rate for IPF is similar to breast cancer, idiopathic pulmonary fibrosis remains characterized as a rare disease. Lack of awareness and information for lesser known diseases such as IPF can affect factors ranging from proper diagnosis to the advancement of the drug development pipeline. One platform which can improve insight into the patient experience is that of social networks. Even in light of recent privacy concerns, social networks provide a well-known platform for clinicians, patients, and advocates to interact and provide feedback in real-time. Unlike other patient reporting and survey instruments which reach limited populations, social networks remain unique in their ability to reach larger, diverse cohorts. This research assesses the validity of microblog network data as applies to the identification of patient-reported outcomes from a global corpus of IPF patients representing a ten-year span (2008-2017) and thirty-three languages.

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