title: [Reliable health information for patients with rare diseases : Quality demands defined by the National Action Plan and how they are put into practice].
abstract: Information for patients with rare diseases has to adhere to strict quality criteria in order to support individual treatment decisions or coping strategies. However, developers are facing specific challenges: For example, the evidence is often insufficient or of very low quality. In the context of the National Action League for People with Rare Diseases (NAMSE), criteria have been developed that assure high-quality information on rare diseases. Core criteria comprise the involvement of patients or their advocates in all stages of the development process, the systematic search and assessment of the evidence, systematic collection of patient experience, transparency in terms of people involved and funding, and nondirective and neutral formulation of content and documentation of the process. In a joint project between the Alliance for Chronic Rare Diseases (ACHSE e. V.) and the German Agency for Quality in Medicine (ÄZQ), ten short information leaflets on different rare diseases have been developed in the past three years, conceived to show the applicability of these criteria. First experiences with this format show that the criteria are adaptive to a broad range of diverse rare diseases and settings. Involving patients and their advocates throughout the whole development process - from prioritization to development of methods and provision of patient experience and coping strategies - is crucial. Insufficient evidence remains a challenge. The examples show that in the absence of proven findings, information that matters to patients and reflects this uncertainty is feasible.
authors.affiliation: Ärztliches Zentrum für Qualität in der Medizin TiergartenTower, Straße des 17. Juni 106-106, 10623, Berlin, Deutschland. schaefer@azq.de.
authors.forename: Corinna
authors.initials: C
authors.lastname: Schaefer
authors.affiliation: Allianz Chronischer Seltener Erkrankungen (ACHSE) e. V., Berlin, Deutschland.
authors.forename: Frank
authors.initials: F
authors.lastname: Brunsmann
authors.affiliation: Ärztliches Zentrum für Qualität in der Medizin TiergartenTower, Straße des 17. Juni 106-106, 10623, Berlin, Deutschland.
authors.forename: Svenja
authors.initials: S
authors.lastname: Siegert
mesh_terms: D054626:Consumer Health Information / Q000592:standards; D005858:Germany; D006078:Government Programs / Q000592:standards*; D063025:Health Information Management / Q000592:standards*; D006801:Humans; 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: Evidence-based information; Good practice guidelines for health information; Patient information; Quality criteria; Rare diseases