Published October 24, 2023 | Version 1
Poster Open

REIS A Citizen Science journey for and with people with rheumatic conditions

  • 1. ROR icon University of Twente
  • 2. ROR icon Roessingh Research and Development
  • 3. ROR icon Sint Maartenskliniek

Description

REIS stands for Reuma en Ik – Self-management and is a project to investigate self-management strategies that people with a rheumatic condition apply. Aim is to provide an overview to inspire others, inform healthcare professionals, and start new empiric research. This project is completely set up and carried out with people diagnosed with a rheumatic condition. REIS is a Dutch word and translates to 'journey'. The poster will visualize the journey we had so far when working together with people with a rheumatic condition shaping a research study. Problem space: A lot of research is being done in relation to rheumatic conditions that focus mainly on the medical perspective. Less is known about what people do themselves to cope with their chronic condition. Unfortunately, there is currently no overview available of which strategies exist, for which phase/for whom it is useful and how people with a rheumatic condition experienced this. We are changing that by conducting a survey to make an inventory of self-management strategies, their experiences (positive/negative) and barriers and facilitators related to these strategies. People with rheumatic conditions and researchers conducted this study in the following phases: 1 Is this research relevant? 2 What does self-management mean? 3 How should the questionnaire look like? 4 Is the questionnaire understandable? 5 Data collection 6 How would you interpret the results? 7 Dissemination of the results Further we will summarize the lessons learned shaping the study together.

Files

REIS A Citizen Science journey for and with people with rheumatic conditions.pdf