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Research for and with people with Rheumatism: Citizen science for self-management

Tuesday, 6 June 2023
Rheumatism is widespread in the Netherlands with nearly 2 million people suffering with some form of the disease. Researchers from Enschede and Twente started REIS (Reuma En Ik: Self management) to find answers.

Rheumatism is slowly growing to be a leading cause of death in the Netherlands. With nearly 2 million people suffering with some form of the disease such as inflammatory rheumatism, osteoarthritis, muscle rheumatism, Bechterew's disease, fibromyalgia and rare forms such as lupus, scleroderma or Sj√∂gren's.¬†Although there exists a lot of research on the medical care of people with rheumatism, less is known about the self-management strategies they can use to deal with their condition.¬†To fill this knowledge gap, three researchers set up the scientific study ‚ÄúREIS‚ÄĚ, which stands for Reuma En Ik: Self management.

REIS focuses on the knowledge and experiences that people with rheumatism acquire in order to deal with their condition.¬†This knowledge, gathered through various approaches, methods and tools is collectively referred to as ‚Äėself-management strategies‚Äô.¬†Self-management is not just about doing it yourself.¬†It is also about being able to make your own decisions.¬†In close collaboration with a group of people with rheumatism (including one of the researchers himself), the researchers are working to explore these strategies.

Voor, door en met mensen met Reuma (For, by and with people with Rheumatism)

This research falls under the concept of Citizen Science for Health. The aim is to conduct research for people with rheumatism, by and with people with rheumatism. The researchers work at the St. Maartens Clinic in Nijmegen, Roessingh Research and Development in Enschede, and the University of Twente (TechMed Center, Faculty of BMS).

The researchers explain: “Together with the people with rheumatism, we have drawn up a questionnaire to ask people about their self-management strategies. We ask what you have tried. Which of these approaches helped? And which ones not? What made you choose a certain approach? What worked? And what worked against?

We want to gain a better insight into the knowledge of people with rheumatism.¬†With the results we cannot say what works in general and what does not.¬†We have no scientific evidence for this.¬†But we do get a good picture of the things that helped people.¬†Maybe also for the things they want to warn others about.¬†With these results we create a kind of 'library' of possible strategies that you can look into if you are lost for a while.¬†Knowledge that comes from people like you and me.‚ÄĚ

The research has been designed to be as accessible as possible, so that everyone can participate. Naturally, the research meets the requirements of good scientific research.

Do you also wish to share your good (and bad) experiences with Rheumatism? Then take part in the online questionnaire! Also, feel free to share the questionnaire with others. Because the more people participate, the more robust the findings are. More information and the link to the questionnaire can be found  here .

If you have any questions regarding this research, please contact¬†¬†Christiane Gr√ľnloh¬†.