OBJECTIVES: Investigate how citizens with Rheumatoid Arthritis (RA) engage in a participatory process of designing a discrete choice experiment (DCE) regarding home monitoring technology specific to RA management with researchers.

METHODS: Citizen science is an approach in which members of the public participate in research activities. In this study, Dutch citizens with RA who were members of a citizen panel were invited to participate in two online meetings with the research team. Subsequent aims of the meetings were to 1) reduce and refine the broad attribute set identified in an earlier study and select levels for the eight most important attributes; 2) refine levels, construct tasks and design the DCE instrument. Collaborative decision making was supported by providing participants with ample information about the study context, the DCE methodology and the specific decisions to be made in each meeting. Citizen and researchers roles and input were assessed through observation, content analysis of the meeting recordings and a self-assessment after each meeting. The survey was pilot tested in a convenience sample of citizens who did and did not participate in the meetings.

RESULTS: A total of 8 citizens participated in the meetings. Participants differed in their chosen role, with the majority acting as partners, while few acted as advisors. All reported positive experiences, emphasizing increased empowerment, high satisfaction, and a sense of being heard. Some participants demonstrated excellent understanding of the key trade-offs in DCE design, for instance by pointing out overlap between attributes unprompted (meeting 1), or asking the researchers how partial vs. full profile design would influence data quality (meeting 2). Pilot testing (n=8) demonstrated a good understanding of the attributes, levels and choice task.

CONCLUSIONS: This study demonstrated feasibility of a citizens approach to the design of a DCE and the value to people with RA and health preference researchers.