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SP0028 A Happy Ending After All – Patient Initiated Research in Rheumatic Diseases in Sweden
  1. U. Bergsten1,2,3
  1. 1R&D centre Spenshult, Halmstad
  2. 2Rheumatology Department, Sahlgrenska University Hospital
  3. 3Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden

Abstract

Background Patients' involvement in healthcare and research has been a growing area in the last decades. In rheumatology this has been highlighted throughout different organizations such as The European League against rheumatism (EULAR) and Outcome measures in rheumatology (OMERACT) in order to increase the involvement of patients' perspective in care and research. The Swedish Rheumatism Association (the national patient organization) and the Foundation of Research & Development center at Spenshult decided to carry out a joint project to develop patient-initiated research in the rheumatic diseases. The project aimed to follow the working process of involving patients in a project group and to describe research issues that were of importance from the patient's point of view.

Method Five research partners were asked to join the project group together with a project leader with a formal research experience. The research partners had experiences of different rheumatic diseases such as rheumatoid arthritis, psoriasis arthritis, Sjögren's syndrome and fibromyalgia. As a method to enable and promote patients' interest the Dialogue model, (developed by Tineke Abma et al.) was chosen. The Dialogue model involves a gradual and systematic approach to stimulate and maintain a dialogue between different stakeholders' issues and has been used in other disease areas.

Results The inventory of research ideas and areas of importance from the patient perspective resulted in several aspects of living of a chronic disease, mostly focused on the patient's dignity, identity and quality of life. The recurring theme was: “How can a person maintain or improve their quality of life despite a chronic illness?” Persons who participated in the focus groups communicated their experiences of having a rheumatic disease and the main theme was in relationship into what way the rheumatic condition has on all domains of life.

Conclusion It is possible involving patients in an early phase of research in order to gain new research ideas. The working process should preferably be well structured and this project was inspired by the Dialog model. This model clarified the steps in the process and helped to engage all stakeholders in the dialogue on an equal basis. As a result of the project the patients' view of important areas for research and implementation came into focus.

Disclosure of Interest None declared

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