University of Twente Student Theses
Incorporating Citizen Science in the Development of a Discrete Choice Experiment Questionnaire
Lusseveld, M.J.F. (2024) Incorporating Citizen Science in the Development of a Discrete Choice Experiment Questionnaire.
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| Abstract: | Background Citizen involvement in healthcare research, such as through citizen science, aims to enhance research relevance and applicability. Health preference methods, such as discrete choice experiments (DCEs), are designed to capture citizen preferences and priorities. Involving citizens, specifically with rheumatoid arthritis (RA) in the development of DCEs potentially improves research inclusivity and alignment with citizen needs. Objectives Investigate and understand how citizens with RA engage in and experience the participatory process of co-designing a DCE focused on home monitoring technologies for RA management with researchers. Methods Citizen science is a form of participatory research in which members of the public participate in research activities. In this study, citizens diagnosed with RA participated in two online meetings with the research team. The first meeting involved collaborative discussions to identify and refine attributes and levels relevant to home monitoring technologies. The second meeting extended this collaboration to refine the DCE questionnaire, discussing and gathering feedback on attributes, levels, choice task format, length, and design. Collaborative decision-making was facilitated by providing participants with comprehensive information about the study, the DCE methodology, and the decisions to be made in each meeting. Participant engagement and experiences were evaluated through qualitative observations, analysis of meeting recordings, and structured reflections. The questionnaire was pilot tested with a convenience sample of citizens who did and did not participate in the meetings. Results Participants actively engaged in decision-making roles as partners. Qualitative analysis revealed positive experiences, emphasizing empowerment, satisfaction, and a sense of being heard. Several citizens showed excellent understanding of key trade-offs in DCE design, noting attribute overlaps unprompted in the first meeting and inquiring about the influence of partial versus overlap design strategies on data quality in the second meeting. Pilot testing of the DCE showed good understanding of the attributes, levels and choice tasks. Conclusion This study demonstrates the feasibility and value of a citizen approach in co-designing a DCE for RA management, showing that individuals with RA actively engage in and positively experience the participatory process. |
| Item Type: | Essay (Master) |
| Faculty: | TNW: Science and Technology |
| Subject: | 70 social sciences in general |
| Programme: | Health Sciences MSc (66851) |
| Link to this item: | https://purl.utwente.nl/essays/101579 |
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