PARE0003 ESTABLISHING A PATIENT TRAINING CENTER OF RHEUMATOLOGY

Abstract

Background: Patient education is considered of pivotal importance for the Organization. Patients should be informed, educated and well trained to acquire the necessary skills needed to deal with the challenges of living with a chronic disease. Equally important is the need of patients to acquire certain skills, necessary for advocating for their rights and representing their Organizations, both at the National but also at the European level. Realizing the above issues, the National Organization decided to create this training centre at its own premises, as it was noted that there was a lack of expertise in the above area, and that patients needed to be empowered to be equal partners in health decisions, but also effective Self managers of their condition. Objectives: One main objective is to educate individual patients to Self manage their disease by accepting the new situation in their life, but also by learning how to effectively communicate with HPs, to be adherent to treatment, to cope with family work and social environments, and to regain self-confidence. The other objective is to train expert patients, enhance their knowledge and empower them for representing the Organization on all relevant Health committees and participate on all stages of the decision making process. Methods: First step was to create a Brand name and acquire the relevant certificate of the establishment of the training centre. After the certification process had been finished, two volunteers from the Organization were trained by the National Authority of Human Resources and after successfully passing the 8-hour examination, they became certified trainers. A committee, under the two coordinators is now in the process of revising the modules of the first 5 courses which are offered initially, by restating the aims and objectives of each course as well as the training procedure, teaching techniques, methods and evaluation process. The courses are: The self-management (running), the expert patient (running) Self Diagnosis (running), Training for parents of Children with Rheumatic diseases (Coming before the end of Year), "Rebuilding the story of our life"-Systemic Sculpture method (Running from October 2019-April 2019) The plans for the next steps include the creation of training course on building patient advocacy skills (Participation in Health committees, HTA, Advisory committees etc) and one on recruiting and training of volunteers. Results: The experience from the implementation at the initial stage of the three training courses (Self-management, expert patient and self-diagnosis) shows that patients are happy to join, to share experiences and feelings and they successfully attempt to use the skills acquired in their everyday life. Some of the Organization's members have now become members on National Health committees. These include the Committee for Pricing of Medical products, National Health Insurance, ad hoc for updating the rights of patients, rare diseases, for digital Health etc. Success of the existing modules has led the Organization to decide on building an online portal for digital learning. Conclusion: The creation of a Rheumatology training centre for patients, although at its initial stage, has shown positive results for patients, by enhancing their ability to deal in an effective way with the chronic disease but also in improving their skills and knowledge to strive for effective advocacy and for being part of all in decisions that affect their rights in health.