Abstract
BACKGROUND: Although birth defects are the leading cause of infant mortality in the United States, methods for observing human pregnancies with birth defect outcomes are limited. OBJECTIVE: The primary objectives of this study were (i) to assess whether rare health-related events-in this case, birth defects-are reported on social media, (ii) to design and deploy a natural language processing (NLP) approach for collecting such sparse data from social media, and (iii) to utilize the collected data to discover a cohort of women whose pregnancies with birth defect outcomes could be observed on social media for epidemiological analysis. METHODS: To assess whether birth defects are mentioned on social media, we mined 432 million tweets posted by 112,647 users who were automatically identified via their public announcements of pregnancy on Twitter. To retrieve tweets that mention birth defects, we developed a rule-based, bootstrapping approach, which relies on a lexicon, lexical variants generated from the lexicon entries, regular expressions, post-processing, and manual analysis guided by distributional properties. To identify users whose pregnancies with birth defect outcomes could be observed for epidemiological analysis, inclusion criteria were (i) tweets indicating that the user's child has a birth defect, and (ii) accessibility to the user's tweets during pregnancy. We conducted a semi-automatic evaluation to estimate the recall of the tweet-collection approach, and performed a preliminary assessment of the prevalence of selected birth defects among the pregnancy cohort derived from Twitter. RESULTS: We manually annotated 16,822 retrieved tweets, distinguishing tweets indicating that the user's child has a birth defect (true positives) from tweets that merely mention birth defects (false positives). Inter-annotator agreement was substantial: κ = 0.79 (Cohen's kappa). Analyzing the timelines of the 646 users whose tweets were true positives resulted in the discovery of 195 users that met the inclusion criteria. Congenital heart defects are the most common type of birth defect reported on Twitter, consistent with findings in the general population. Based on an evaluation of 4169 tweets retrieved using alternative text mining methods, the recall of the tweet-collection approach was 0.95. CONCLUSIONS: Our contributions include (i) evidence that rare health-related events are indeed reported on Twitter, (ii) a generalizable, systematic NLP approach for collecting sparse tweets, (iii) a semi-automatic method to identify undetected tweets (false negatives), and (iv) a collection of publicly available tweets by pregnant users with birth defect outcomes, which could be used for future epidemiological analysis. In future work, the annotated tweets could be used to train machine learning algorithms to automatically identify users reporting birth defect outcomes, enabling the large-scale use of social media mining as a complementary method for such epidemiological research.