title: Specialized tools are needed when searching the web for rare disease diagnoses.
abstract: 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.
authors.affiliation: DTU Compute; Technical University of Denmark; Lyngby, Denmark ; Department of Computer Science; University of Copenhagen; Copenhagen, Denmark.
authors.forename: Radu
authors.initials: R
authors.lastname: Dragusin
authors.affiliation: DTU Compute; Technical University of Denmark; Lyngby, Denmark ; FindWise; Copenhagen, Denmark.
authors.forename: Paula
authors.initials: P
authors.lastname: Petcu
authors.affiliation: DTU Compute; Technical University of Denmark; Lyngby, Denmark ; Department of Computer Science; University of Copenhagen; Copenhagen, Denmark.
authors.forename: Christina
authors.initials: C
authors.lastname: Lioma
authors.affiliation: Information Systems and Interaction Design; Royal School of Library and Information Science; Copenhagen, Denmark.
authors.forename: Birger
authors.initials: B
authors.lastname: Larsen
authors.affiliation: Department of Clinical Biochemistry; Bispebjerg Hospital; Copenhagen, Denmark.
authors.forename: Henrik L
authors.initials: HL
authors.lastname: Jørgensen
authors.affiliation: DTU Compute; Technical University of Denmark; Lyngby, Denmark ; Department of Computer Science; University College London; London, UK.
authors.forename: Ingemar J
authors.initials: IJ
authors.lastname: Cox
authors.affiliation: DTU Compute; Technical University of Denmark; Lyngby, Denmark.
authors.forename: Lars Kai
authors.initials: LK
authors.lastname: Hansen
authors.affiliation: Information Systems and Interaction Design; Royal School of Library and Information Science; Copenhagen, Denmark.
authors.forename: Peter
authors.initials: P
authors.lastname: Ingwersen
authors.affiliation: DTU Compute; Technical University of Denmark; Lyngby, Denmark.
authors.forename: Ole
authors.initials: O
authors.lastname: Winther
keywords: information technology within medicine; rare diagnoses; rare diseases; search engines