Patient-initiated research in rheumatic diseases in Sweden--dignity, identity and quality of life in focus when patients set the research agenda.

Abstract

Patients' involvement in healthcare and research has been a growing area in the last few decades. The World Health Organization (WHO) emphasizes the importance of personalized care of the chronic diseases in order to optimize care and treatment for the individual patient (WHO, 2005). In rheumatology, this has been highlighted by different organizations, such as The European League against Rheumatism (EULAR) (de Wit et al., 2013) and Outcome Measures in Rheumatology (OMERACT) (Kirwan et al., 2009), in order to increase the involvement of patients' perspective in care and research. The rheumatic diseases consist of 80–100 diagnoses, and about 1 million people in Sweden are affected. The most common rheumatic diseases are rheumatoid arthritis, ankylosing spondylitis, osteoarthritis and chronic pain/fibromyalgia. The common denominators of the rheumatic diseases are that they are usually long lasting and affect the daily life of the patient, including pain, fatigue and problems with physical activity and function. Previous research has shown that patients' perspectives of rheumatic diseases are insufficiently illuminated and that there are differences between patients' and health professionals' perspectives in relation to the rheumatic diseases and their consequences (Fair, 2003; Gorter et al., 2002; Stinson et al., 2008; Zangi et al., 2011). For example, patients focus on their illness experience and health professionals focus on the diseases in a general way. The quality of an encounter depends on the health professional's communications skills (Fair, 2003). Studies have shown that patients with rheumatic disease have needs that are not met by health services. Unmet needs are described as a lack of continuity, a lack of discussion with patients about the physical consequences of their disease and the need of patients to be treated as a person rather than as a disease (Bergsten et al., 2011; Kjeken et al., 2006; Lacaille et al., 2007; Leung et al., 2009; Sanderson et al., 2011). Patients' interests in health care and in research are highlighted as important aspects of the future of healthcare. The Swedish Rheumatism Association (the national patient organization) and the Foundation of Research and Development at Spenshult decided to carry out a joint project to develop patient-initiated research into the rheumatic diseases. The project aimed to follow the working process of involving patients in a project group and to describe the research issues that were important from the patient's point of view.