Defining research priorities in cystic fibrosis. Can existing knowledge and training in biomedical research affect the choice?
Patient empowerment
Patient-centered outcomes
Research Priorities
Stakeholders
Journal
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
ISSN: 1873-5010
Titre abrégé: J Cyst Fibros
Pays: Netherlands
ID NLM: 101128966
Informations de publication
Date de publication:
05 2019
05 2019
Historique:
received:
17
01
2018
revised:
22
02
2018
accepted:
22
02
2018
pubmed:
20
3
2018
medline:
15
8
2020
entrez:
20
3
2018
Statut:
ppublish
Résumé
The aim of this report is to assess whether the research issues priorities are perceived differently according to the Stakeholders (SH)'s individual knowledge of research topics and degree of training in biomedical research. Four groups of SH were enrolled in this study: 1. Skilled SH, specifically trained in biomedicine; 2. Unskilled untrained SH who responded to a written questionnaire in 2015; 3. SH who were trained for one year in a course delivered by professionals; 4. Untrained SH who responded to an online questionnaire in 2017. The large ranking order variability observed among groups addresses the question that the choices are markedly influenced by the SH's backgrounds. Such results emphasize the need to consider the education level and the delivery of ad hoc training activities by professionals to broaden the base of SH who may be considered qualified to transfer the Patient Centered Outcome Research principles into practice.
Identifiants
pubmed: 29551462
pii: S1569-1993(18)30032-8
doi: 10.1016/j.jcf.2018.02.009
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
378-381Informations de copyright
Copyright © 2018 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.