Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study

JMIR Research Protocols
Svenja LitzkendorfMartin Frank

Abstract

Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE). The objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers. We chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that t...Continue Reading

References

Oct 1, 1991·The British Journal of Dermatology·S W Lanigan, A Layton
Jul 14, 2010·Patient Preference and Adherence·Albert I MattiCelia S Chen
Apr 9, 2011·Journal of Health Communication·Delesha M CarpenterJoanne M Jordan
May 27, 2014·Patient Education and Counseling·Emerência TeixeiraUNKNOWN EFAPH, the European Federation of Associations of Patients with Haemochromatosis
Aug 27, 2016·Interactive Journal of Medical Research·Frédéric PauerTobias Hartz

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Software Mentioned

ZIPSE
Orphanet
MAXQDA

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