Objective: On behalf of the "systemic inflammatory rheumatic diseases network" comprehensive, nationwide horizontal and vertical cross-linking of research and care is to be developed for the first time. The quality of scientific work and patient care is to be increased in the medium term through this improved communication and co-operation. Our objective was to determine what hardware and software are available to the patients involved, with a view to the Internet being used as a basis for communication. The ultimate aim was to provide patients with an adequate source of information on care.
Methods: A survey was carried out among 400 patients attending our outpatient clinics. Data on the hardware and software used and on Internet access and patterns and degree of utilization were collected using a unilateral questionnaire.
Results: 326 patients filled in the questionnaire. 163 of those responding had Internet access, with younger and better educated patients using the Internet significantly more frequently. No dependency was noted on gender or marital status. Mean time duration for Internet use was longer in men. 55.8% of the internet users searched for medical questions. Major search topics included up to date therapeutic options (46.6%) and information on specific diseases (28.8%).
Conclusion: Internet is an important information medium for patients. Technical requirements and high motivation make communication practicable for about 50% of patients. To ensure acceptance, the Internet platform of the systemic inflammatory rheumatic diseases network needs to be aligned to patients' requirements, bearing in mind the need for extensive high-value, reliable scientific information to be offered on the website.