Specialized tools are needed when searching the web for rare disease diagnoses

Rare Dis. 2013 May 16:1:e25001. doi: 10.4161/rdis.25001. eCollection 2013.


In our recent paper, we study web search as an aid in the process of diagnosing rare diseases. To answer the question of how well Google Search and PubMed perform, we created an evaluation framework with 56 diagnostic cases and made our own specialized search engine, FindZebra (findzebra.com). FindZebra uses a set of publicly available curated sources on rare diseases and an open-source information retrieval system, Indri. Our evaluation and the feedback received after the publication of our paper both show that FindZebra outperforms Google Search and PubMed. In this paper, we summarize the original findings and the response to FindZebra, discuss why Google Search is not designed for specialized tasks and outline some of the current trends in using web resources and social media for medical diagnosis.

Keywords: information technology within medicine; rare diagnoses; rare diseases; search engines.