REIS: A journey to self-management in people with a rheumatic condition

About 2 million people in the Netherlands live with some form of rheumatism. A lot of research is done on drug-based care for people with rheumatism. In recent years there is a shift in thinking, where people are given more agency and there is more emphasis on self-management.

Self-management are actions and skills aimed at dealing with symptoms and consequences of the condition on well-being and societal participation. Self-management is not just about 'doing it yourself'. It is also about 'determining for yourself'. Out of necessity, many people start figuring out for themselves what can help them against symptoms.

There is no systematic or current picture of the experiences with their deployed self-management strategies. With our study, we wanted to give an overview of strategies, people's positive and negative experiences with them and what are promoting and hindering factors to take up these strategies. The resulting overview could change treatment and disease management for people with rheumatism by supporting them in their self-management.

The project took a participatory citizen science approach. The research group consists of about 5 researchers and 12 people with different types of rheumatism. The group decided on the relevance of the topic. After, they formulated the research question, and designed a survey that was distributed digitally to all people with rheumatism in the Netherlands. They drafted the data management plan together. In the analysis phase, the group discussed different frameworks that could be used for coding the data, and worked together in reporting and disseminating the results.

The project applied a strong collaboration between people with rheumatism and researchers, adding to the standard research process. By giving people agency in the decision-making process in the research, including what would be done with the collected data, people are taken serious and knowledge of both researchers and people with rheumatism is utilized.