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

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.