title: [Participation of patients in medical research].
abstract: Physicians and patients often have a different perspective on disease. This perspective is traditionally determined by anamnesis, physical examination, and objective measurements such a laboratory investigation and X-ray imaging. However, patient reported outcome parameters such as fatigue or sleep quality have been found to be as informative for assessment of the illness status, improvement during interventions or prediction of long-term outcome. The experience skills of patients are a valuable supplement to the skills of research workers and physicians. In scientific research in the area of rheumatology there is considerable experience with patient participation, for example in the international network 'Outcome measures in Rheumatology Clinical Trials' (OMERACT). One of the preconditions for optimal patient participation is avoidance of jargon. Patients and research workers should also realise that the relationship between physician and patient differs basically from the relationship between patient and research worker.
authors.affiliation: VU Medisch Centrum, afd. Reumatologie, Amsterdam, the Netherlands. L.vanTuyl@vumc.nl
authors.forename: Lilian H D
authors.initials: LH
authors.lastname: van Tuyl
authors.forename: Marieke M J H
authors.initials: MM
authors.lastname: Scholte-Voshaar
mesh_terms: D002986:Clinical Trials as Topic; D003142:Communication; D006801:Humans; D010358:Patient Participation; D010817:Physician-Patient Relations; D012216:Rheumatic Diseases / Q000628:therapy*; D012219:Rheumatology / Q000592:standards*