A recent report from the Pew Internet & American Life Project found that 35 percent of American adults have used the Internet to specifically diagnose a medical condition they, or someone else, might have. Similarly, a 2011 survey showed that 46 percent of physicians frequently turn to sites like Google or Yahoo to treat, diagnose or care for patients.
But as many patients with rare diseases know, using conventional Internet search engines to diagnose a condition that occurs in less than 1 in 2000 of the population can prove tricky. So a group of European researchers developed an alternative, called FindZebra, to help physicians and patients' conduct more effective search queries. Technology Review's Physics arXiv Blog reports:
The magic sauce in FindZebra is the index it uses to hunt for results. [Radu Dragusin, assistant lecturer at the University of Copenhagen in Denmark, and colleagues] have created this index by crawling a specially selected set of curated databases on rare diseases. These include the Online Mendelian Inheritance in Man database, the Genetic and Rare Diseases Information Center and Orphanet.
They then use the open source information retrieval tool Indri to search this index via a website with a conventional search engine interface. The result is FindZebra.
Finally, they compared the results of searches on FindZebra against the same search on Google applied to the same limited dataset, a feature that is possible with advanced Google searches. Dragusin and co say that the Google results are significantly worse than their own.
Although still a research project, [developers] have made their rare disease search engine publicly available at www.findzebra.com. This could clearly become a valuable tool for the medical community.