title: [Central information portal on rare diseases : Implementation of quality- and needs-oriented information management].
abstract: BACKGROUND
  A central information portal on rare diseases (ZIPSE) has been conceptualized and implemented that allows patients, relatives and health care professionals to access quality-assured information. For this purpose, quality criteria have been developed specifically for rare diseases. At the same time, the information basis should take into account the specific needs of those interested.
  
  
  OBJECTIVE
  The needs of patients and relatives regarding online-based information are analyzed. Based on this, we examined to what extent the information basis, which is available according to the ZIPSE quality criteria, can cover these needs. If necessary, measures have to be developed to ensure quality- as well as needs-oriented information management.
  
  
  METHODS
  Qualitative interviews with patients and relatives were conducted, which were then evaluated using content analysis. Subsequently, a quantitative evaluation of the information on rare diseases in the portal was made. The research addresses how many websites do not fulfil the quality criteria, from which group of provider these websites originate and which criteria are not fulfilled. This is followed by a comparison of the quantitative and qualitative results.
  
  
  CONCLUSIONS
  When looking for information on the Internet, the websites of self-help groups represent a significant source. These are perceived as very trustworthy and in the later course of the disease, offer detailed information on important information areas. Information websites from self-help groups, however, often do not meet quality requirements. Therefore, a transparent representation is made regarding the quality of the ZIPSE information pages. Pages that are not quality-assured can be actively requested, but will be clearly identified.
authors.affiliation: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Str. 1, 30159, Hannover, Deutschland. sl@cherh.de.
authors.forename: Svenja
authors.initials: S
authors.lastname: Litzkendorf
authors.affiliation: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Str. 1, 30159, Hannover, Deutschland.
authors.forename: Frédéric
authors.initials: F
authors.lastname: Pauer
authors.affiliation: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Str. 1, 30159, Hannover, Deutschland.
authors.forename: Jan
authors.initials: J
authors.lastname: Zeidler
authors.affiliation: Medical Informatics Group (MIG), Universitätsklinikum Frankfurt, Theodor-Stern-Kai 7, Frankfurt am Main, 60590, Deutschland.
authors.forename: Jens
authors.initials: J
authors.lastname: Göbel
authors.affiliation: Medical Informatics Group (MIG), Universitätsklinikum Frankfurt, Theodor-Stern-Kai 7, Frankfurt am Main, 60590, Deutschland.
authors.forename: Holger
authors.initials: H
authors.lastname: Storf
authors.affiliation: Center for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Otto-Brenner-Str. 1, 30159, Hannover, Deutschland.
authors.forename: J-Matthias
authors.initials: JM
authors.lastname: Graf von der Schulenburg
mesh_terms: D054626:Consumer Health Information / Q000592:standards; D000068598:Data Accuracy; D005858:Germany; D063025:Health Information Management / Q000592:standards*; D033181:Information Dissemination / Q000379:methods*; D000072638:Patient Portals / Q000592:standards*; D011785:Quality Assurance, Health Care / Q000592:standards*; D035583:Rare Diseases / Q000175:diagnosis* / Q000628:therapy*
keywords: Information management; Mixed methods; Quality criteria; Rare diseases; ZIPSE information portal