PHYS THER
Vol. 90, No. 3, March 2010, pp. 450-460
DOI: 10.2522/ptj.20080381
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CARE V Conference Series

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

Ingvild Kjeken, Connie Ziegler, Jack Skrolsvik, Jan Bagge, Geir Smedslund, Anne Tøvik, Hanne S. Dagfinrud, Ingemar F. Petersson and Kåre Birger Hagen

I. Kjeken, OT, PhD, is Senior Researcher, National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway.
C. Ziegler, Bachelor in German and Danish, is Project Manager, Danish Rheumatism Association, Gentofte, Denmark.
J. Skrolsvik, Bachelor in Marketing Management, is General Secretary, Norwegian Rheumatism Association, Oslo, Norway.
J. Bagge, Master of Social Science, is Research Executive, Swedish Rheumatism Association, Stockholm, Sweden.
G. Smedslund, PhD, is Senior Researcher, National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital.
A. Tøvik, Bachelor in Social Work, is Social Worker, National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital.
H.S. Dagfinrud, PT, PhD, is Senior Researcher, National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital.
I.F. Petersson, MD, PhD, is Associate Professor, Departments of Orthopaedics and Rheumatology, Lund University and Lund University Hospital, Lund, Sweden.
KB Hagen, PhD, is Senior Researcher, National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital.

Address all correspondence to Dr Kjeken at: ingvild.kjeken{at}diakonsyk.no.

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.


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