Details
| Titel in Übersetzung | Central information portal on rare diseases: Implementation of quality- and needs-oriented information management |
|---|---|
| Originalsprache | Deutsch |
| Seiten (von - bis) | 494-502 |
| Seitenumfang | 9 |
| Fachzeitschrift | Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz |
| Jahrgang | 60 |
| Ausgabenummer | 5 |
| Frühes Online-Datum | 7 März 2017 |
| Publikationsstatus | Veröffentlicht - Mai 2017 |
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. Objectives: 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. Materials and 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. Results and 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.
Schlagwörter
- Information management, Mixed methods, Quality criteria, Rare diseases, ZIPSE information portal
ASJC Scopus Sachgebiete
- Medizin (insg.)
- Öffentliche Gesundheit, Umwelt- und Arbeitsmedizin
Ziele für nachhaltige Entwicklung
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in: Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, Jahrgang 60, Nr. 5, 05.2017, S. 494-502.
Publikation: Beitrag in Fachzeitschrift › Artikel › Forschung › Peer-Review
}
TY - JOUR
T1 - Zentrales Informationsportal über seltene Erkrankungen
T2 - Umsetzung eines qualitäts- und bedarfsorientierten Informationsmanagements
AU - Litzkendorf, Svenja
AU - Pauer, Frédéric
AU - Zeidler, Jan
AU - Göbel, Jens
AU - Storf, Holger
AU - Graf von der Schulenburg, J. Matthias
N1 - Publisher Copyright: © 2017, Springer-Verlag Berlin Heidelberg. Copyright: Copyright 2017 Elsevier B.V., All rights reserved.
PY - 2017/5
Y1 - 2017/5
N2 - 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. Objectives: 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. Materials and 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. Results and 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.
AB - 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. Objectives: 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. Materials and 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. Results and 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.
KW - Information management
KW - Mixed methods
KW - Quality criteria
KW - Rare diseases
KW - ZIPSE information portal
UR - http://www.scopus.com/inward/record.url?scp=85014510663&partnerID=8YFLogxK
U2 - 10.1007/s00103-017-2527-8
DO - 10.1007/s00103-017-2527-8
M3 - Artikel
C2 - 28271149
AN - SCOPUS:85014510663
VL - 60
SP - 494
EP - 502
JO - Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
JF - Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz
SN - 1436-9990
IS - 5
ER -