Background The pharmaceutical industry, regulators and the rheumatology community have recognised the need for observational studies to monitor safety and real world long-term effectiveness of biotherapies. Physician readiness and motivation to contribute information and data to registries, however, has received little attention.
Objectives To examine factors associated with physicians' participation in a clinical registry.
Methods The Swiss Clinical Quality Management (SCQM) for rheumatic diseases is a population-based cohort of patients, affected by various rheumatic diseases, that is sponsored by the Swiss Society of Rheumatology. More than 80% of Swiss rheumatologists have registered patient information in the SCQM database without financial compensation of any sort. In order to understand the physicians' motivations to participate, the SCQM queried all Swiss rheumatologists with a series of specific questions. A descriptive analysis was performed on the results of the questionnaire.
Results In February of 2010, 480 rheumatologists received the SCQM participation survey. Of these, 164 (33%) answers were received. Twelve percent of participants declared no participation in the registry, while the remaining 88% declared the input of at least one patient in the registry.
The most common reasons motivating participation were feedback on patients' disease characteristics or quality management (69%), interest in Swiss rheumatology research (80%) and finally, health insurance aspects (∼36%). In the results of the SCQM survey, interest in research was the same in all types of institutions (hospital, university hospital, private practice), seen at 80%. Furthermore, there was a similar distribution throughout all categories regarding the positive benefits of receiving feedback from the SCQM database, other participating physicians and researchers. Among non-participants, fifty-nine percent stated that lack of time for additional administrative tasks was the reason for not registering patient data in the SCQM database.
Conclusions While the importance of clinical registries has greatly increased over the past decades, it is critical to maximise the participation of physicians by addressing their various needs and concerns. The driving forces for participation, as well as the de-motivating factors, may vary by work setting, age groups and other factors. These factors need to be addressed specifically to keep participating physicians involved and to engage rheumatologists who do not currently use clinical registries.
Disclosure of Interest None declared