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How to Develop Patient-Centered Research: Some Perspectives Based on Surveys Among People With Rheumatic Diseases in Scandinavia

Kjeken, Ingvild; Ziegler, Connie; Skrolsvik, Jack; Bagge, Jan; Smedslund, Geir; Tovik, Anne; Dagfinrud, Hanne S.; Petersson, Ingemar LU and Hagen, Kare Birger (2010) In Physical Therapy 90(3). p.450-460
Abstract
Patient-centered research addresses the research agenda of patients and captures aspects of health and functioning that they consider important. Yet, those who live with a disease or condition have limited influence when it comes to setting the research agenda, and we know little about how they experience being participants in research studies. Furthermore, knowledge is limited concerning factors enhancing or hindering patients' participation in trials and the format that people with rheumatic diseases and their families prefer for dissemination of the results from clinical research. This perspective article describes the research priorities of people with rheumatic diseases in Scandinavia, their experiences and attitudes concerning... (More)
Patient-centered research addresses the research agenda of patients and captures aspects of health and functioning that they consider important. Yet, those who live with a disease or condition have limited influence when it comes to setting the research agenda, and we know little about how they experience being participants in research studies. Furthermore, knowledge is limited concerning factors enhancing or hindering patients' participation in trials and the format that people with rheumatic diseases and their families prefer for dissemination of the results from clinical research. This perspective article describes the research priorities of people with rheumatic diseases in Scandinavia, their experiences and attitudes concerning participation in research projects, and which format for research information they prefer. Based on results from 3 surveys organized by the Scandinavian Rheumatism Associations and on related research literature, the possible implications for future research also are discussed. (Less)
Please use this url to cite or link to this publication:
author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Physical Therapy
volume
90
issue
3
pages
450 - 460
publisher
Amer Physical Therapy Assoc
external identifiers
  • wos:000276030400017
  • scopus:77949622302
ISSN
0031-9023
DOI
10.2522/ptj.20080381
language
English
LU publication?
yes
id
0f0e5dd0-c5aa-40c9-bad1-8981949e3982 (old id 1586474)
date added to LUP
2010-04-28 07:39:46
date last changed
2018-05-29 11:25:44
@article{0f0e5dd0-c5aa-40c9-bad1-8981949e3982,
  abstract     = {Patient-centered research addresses the research agenda of patients and captures aspects of health and functioning that they consider important. Yet, those who live with a disease or condition have limited influence when it comes to setting the research agenda, and we know little about how they experience being participants in research studies. Furthermore, knowledge is limited concerning factors enhancing or hindering patients' participation in trials and the format that people with rheumatic diseases and their families prefer for dissemination of the results from clinical research. This perspective article describes the research priorities of people with rheumatic diseases in Scandinavia, their experiences and attitudes concerning participation in research projects, and which format for research information they prefer. Based on results from 3 surveys organized by the Scandinavian Rheumatism Associations and on related research literature, the possible implications for future research also are discussed.},
  author       = {Kjeken, Ingvild and Ziegler, Connie and Skrolsvik, Jack and Bagge, Jan and Smedslund, Geir and Tovik, Anne and Dagfinrud, Hanne S. and Petersson, Ingemar and Hagen, Kare Birger},
  issn         = {0031-9023},
  language     = {eng},
  number       = {3},
  pages        = {450--460},
  publisher    = {Amer Physical Therapy Assoc},
  series       = {Physical Therapy},
  title        = {How to Develop Patient-Centered Research: Some Perspectives Based on Surveys Among People With Rheumatic Diseases in Scandinavia},
  url          = {http://dx.doi.org/10.2522/ptj.20080381},
  volume       = {90},
  year         = {2010},
}