Background It is becoming common for international meetings in the field of joint and bone health to include patient-sections. The European League Against Rheumatism has been invited patients to participate in its annual congresses for several years, providing different opportunities for them to and express their points of view. However, from personal communications with patients who have been involved in the EULAR congresses, the study researchers have the impression that their participation is often experienced as symbolic and patients’ involvement in decision making is marginal.
Objectives The objectives of the research was to describe the experience of Estonian patients with rheumatic diseases with reference to their participation in rheumatology-related international conferences in foreign countries, factors affecting their experience and the most important topics for the patients at these conferences.
Methods Six patients who had participated in the EULAR annual congresses over different years were interviewed face-to-face. The interviews were audio taped, transcribed and analyzed using the principles of thematic analysis.
Results The results showed that at international conferences in foreign countries Estonian patients contributed mainly to patient sessions. They had also hoped have more chances to interact with the other conference participans. The main gain of participating at an international conference is the received information, mainly by becoming aware of other countries’ experiences and scientific information. The feeling of inequality at the conference is due to the lack of interest of health professionals in what the patients have to present and the fact that patients are not welcome to all the events at the conference. Based on the statements of the patients, their experiences at the conferences differ due to several factors. The main factors influencing their experience are prior knowledge and skills, conference official language, first time or repeated participation, support from the own country’s patient organization or lack of it and poor financing opportunities for participating in foreign conferences.
Main expectation of the physical conference environment for patient is a confortable place for resting, which helps to maintain and restore a better feeling. A physical difficulty in participating in these conferences as described by patients is the need to travel long distances, the uncomfortable seatings, extended period of standing during poster presentations and changes in temperature in the conference rooms. Overall, participating in these conferences is described as a physical challenge, which can later cause progression of the disease.
Important topics for Estonian patients at foreign conferences are related to the approaches to disease and treatment and the progress of patient organizations. In health service development it is important to promote cooperation with healthcare workers. It is important to inform the general public about living with rheumatic disease and communicating with the government and employers to create labor and legislative regulations to ensure equal opportunities.
Conclusions Based on the Estonian patients’ experiences the feeling of their symbolic participation is mainly connected to communication issues and insufficient support from other conference participants.
Disclosure of Interest None Declared