TY  - JOUR
A1  - Litzkendorf, Svenja
A1  - Hartz, Tobias
A1  - Göbel, Jens
A1  - Storf, Holger
A1  - Pauer, Frédéric
A1  - Babac, Ana
A1  - Lührs, Verena
A1  - Bruckner-Tuderman, Leena
A1  - Schauer, Franziska
A1  - Schmidtke, Jörg
A1  - Biehl, Lisa
A1  - Wagner, Thomas O. F.
A1  - Schulenburg, Johann-Matthias von der
A1  - Frank, Martin
T1  - Conceptualization and implementation of the central information portal on rare diseases : protocol for a qualitative study
T2  - Journal of medical internet research. Research Protocols
N2  - Background: 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).
Objective: 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.
Methods: 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 the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal.
Results: A portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions.
Conclusions: The implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases.
Registered Report Identifier: RR1-10.2196/7425.
KW  - rare diseases
KW  - health information exchange
KW  - quality control
KW  - qualitative research
Y1  - 2018
UR  - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/46792
UR  - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-467929
SN  - 1929-0748
N1  - Correction erschienen in: Journal of medical internet research. Research Protocols, 7.2018, Nr. 9, e11248, doi:10.2196/11248
N1  - ©Svenja Litzkendorf, Tobias Hartz, Jens Göbel, Holger Storf, Frédéric Pauer, Ana Babac, Verena Lührs, Leena Bruckner-Tuderman, Franziska Schauer, Jörg Schmidtke, Lisa Biehl, TOF Wagner, J-Matthias Graf von der Schulenburg, Martin Frank. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 11.05.2018. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.
VL  - 7
IS  - 5, e112
SP  - 1
EP  - 11
PB  - JMIR
CY  - Toronto
ER  -