title: Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases.
abstract: BACKGROUND
  The European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the quality of information available on the Web varies considerably. Thus, quality criteria for websites about rare diseases are needed.
  
  
  OBJECTIVE
  The objective of this study was to generate a catalog of quality criteria suitable for rare diseases.
  
  
  METHODS
  First, relevant certificates and quality recommendations for health information websites were identified through a comprehensive Web search. Second, all considered quality criteria of each certification program and catalog were examined, extracted into an overview table, and analyzed by thematic content. Finally, an interdisciplinary expert group verified the relevant quality criteria.
  
  
  RESULTS
  We identified 9 quality certificates and criteria catalogs for health information websites with 304 single criteria items. Through this, we aggregated 163 various quality criteria, each assigned to one of the following categories: thematic, technical, service, content, and legal. Finally, a consensus about 13 quality criteria for websites offering medical information on rare diseases was determined. Of these categories, 4 (data protection concept, imprint, creation and updating date, and possibility to contact the website provider) were identified as being the most important for publishing medical information about rare diseases.
  
  
  CONCLUSIONS
  The large number of different quality criteria appearing within a relatively small number of criteria catalogs shows that the opinion of what is important in the quality of health information differs. In addition, to define useful quality criteria for websites about rare diseases, which are an essential source of information for many patients, a trade-off is necessary between the high standard of quality criteria for health information websites in general and the limited provision of information about some rare diseases. Finally, transparently presented quality assessments can help people to find reliable information and to assess its quality.
authors: Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany. frp@cherh.de.
authors: Frédéric
authors: http://orcid.org/0000-0003-1138-0283
authors: F
authors: Pauer
authors: Jens
authors: http://orcid.org/0000-0001-8625-0841
authors: J
authors: Göbel
authors: Holger
authors: http://orcid.org/0000-0001-8126-9535
authors: H
authors: Storf
authors: Svenja
authors: http://orcid.org/0000-0003-1342-7196
authors: S
authors: Litzkendorf
authors: Ana
authors: http://orcid.org/0000-0002-0210-5370
authors: A
authors: Babac
authors: Martin
authors: http://orcid.org/0000-0001-6817-6748
authors: M
authors: Frank
authors: Verena
authors: http://orcid.org/0000-0003-2153-4135
authors: V
authors: Lührs
authors: Franziska
authors: http://orcid.org/0000-0001-5147-0123
authors: F
authors: Schauer
authors: Jörg
authors: http://orcid.org/0000-0002-6094-0120
authors: J
authors: Schmidtke
authors: Lisa
authors: http://orcid.org/0000-0002-7654-3808
authors: L
authors: Biehl
authors: Thomas Of
authors: http://orcid.org/0000-0002-6465-4244
authors: TO
authors: Wagner
authors: Frank
authors: http://orcid.org/0000-0001-8362-5636
authors: F
authors: Ückert
authors: Johann-Matthias
authors: http://orcid.org/0000-0002-5322-9453
authors: JM
authors: Graf von der Schulenburg
authors: Tobias
authors: http://orcid.org/0000-0002-1704-0338
authors: T
authors: Hartz
keywords: Internet; health information exchange; quality indicators; rare diseases; self-help groups