Article

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.

Langue : ANGLAIS