OBJECTIVES : A factor contributing to the value of patient preference studies is patient centricity, i.e. the extent to which patients are involved in the design and conduct of these studies. This study aimed to explore how patients want to be involved in patient preference studies.

METHODS : Semi-structured interviews were conducted with patient experts, advocates or representatives within 3 different disease areas: rheumatic diseases, cancer and neuromuscular disorders. For each disease area, interviews were conducted with participants from Belgium, the Netherlands and the UK. An interview guide was set-up based on a literature review and covered topics relating to timing, level, and requirements of patient involvement in patient preference studies. Interviews were audio-recorded, transcribed and analyzed using framework analysis in NVivo 12.

RESULTS : In total 14 interviews were conducted. Some interviewees believed that patients should be involved in all steps of a patient preference study. Patient involvement seemed most valuable in the design phase through defining the research question and the design of the instrument, including questions, attributes and levels to align priority-setting and ensure understanding by patients. In the conduct of the study, patients can be involved for optimal interpretation of results. Most interviewees mentioned that patient involvement should be on the level of giving advice or collaboration, and that patients should not be in control of a patient preference study. Interviewees expressed requirements for patient involvement relating to the knowledge of the involved patient, time investment, compensation and other incentives.

CONCLUSIONS : Patients believe their involvement in patient preference studies is of most added value during early stages of the study and during interpretation of results. Patients want to be involved as advisors or collaborators, and considering their requirements will result in a most optimal partnership.