Background Rheumatic diseases can cause significant restrictions for sufferers in virtually all aspects of everyday life. Those who are affected often feel like they are on their own with their symptoms. Information about their illness, treatment options and the responsibilities of corresponding specialists is often not issued in layman's terms. Studies have shown that patients who have received adequate information handle their illness better and are able to positively influence the progression of their illness .
Objectives Patient Empowerment should be achieved by providing the patient with information about a) their illness, b) treatment options and c) specialists and contacts. Those who are affected should feel empowered as responsible patients to be able to participate in decision-making processes regarding the types of treatment available and to have a discussion with a doctor on an equal footing. Those who are affected should also be able to carry out movement exercises independently and integrate joint protection strategies into their everyday lives. What is more, a platform should be created for those who are affected, so that they can directly contact specialists, health professionals and others who are affected.
Methods Rheumaliga Schweiz organises a National Action Week on a specific topic in September every year in several cities throughout Switzerland. Specialists (rheumatologists, surgeons, physiotherapists, occupational therapists, psychologists and others) offer information on specific symptoms and the treatment options available in layman's terms. The events are free of charge. The national office provides its member organisations with a concept for the event that has been compiled by a specialist group. The lectures are compiled by experts in their field and are adapted accordingly so that they are suitable for the general public. In this way, it is guaranteed that both up-to-date and technically flawless contents are presented at all events. Speakers are even on hand to offer personal advice to visitors during the breaks. Other specialists present their offerings at information stands. Emphasis is placed on regional roots both in terms of the speakers and the information stands.
Results The National Action Week has become a fixed series of events for people who are affected by rheumatism in recent years. In the meantime, we have been able to organise approximately 15 events each year with the support of our member organisations. On average, each individual event is attended by 150 participants. This means that on the whole, over 2,200 people across Switzerland can benefit from an information event every year. In a survey carried out, 94% of participants stated that they had benefited considerably from the event.
Focussing the event in a period of a single week makes it possible to use resources sparingly on the one hand, whilst also facilitating media work.
Conclusions Rheumaliga Schweiz will continue to hold an annual action week for people affected by rheumatism in the future. There is a good balance between the expenses incurred for this by Rheumaliga Schweiz and the benefits gained by those who are affected.
Floyd J. Fowler Jr., Carrie A. Levin, and Karen R. Sepucha. Informing and Involving Patients to Improve the Quality of Medical Decisions. Health Affairs 30, No.4 (2011), pp. 699–707.
Disclosure of Interest None declared