Citizen Science for Musculoskeletal Health Research: Identifying Patient-Led Research Priorities in Switzerland

This project addresses a critical scientific gap: the underrepresentation of patient perspectives and lived priorities in population-based MSK research. With a structured citizen science design, this study aims to generate evidence on what matters most to people living with musculoskeletal (MSK) pain conditions in Switzerland by identifying and develop consensus on patient-led MSK health research priorities. A diverse Citizen Science Board (CSB) of 45-60 individuals with lived experience of MSK pain conditions will be established. Attention will be paid to diversity in age, sex, and socioeconomic background. The project involves a three-phase participatory process: (1) Exploration of priorities: The objective of the first workshop is to foster mutual understanding among members, provide an overview of the current evidence on MSK conditions, introduce the project’s aims, and collaboratively identify research topics. These will be identified in group work. Each group will be supported with a moderator whose role is to facilitate the discussion and gather the generated research topics together with the group. To ensure diverse linguistic and regional inclusion and given the high interest across the different language regions, the first workshop will be split into three in-person workshops: in Zürich, Lausanne and Lugano. (2) Validation via a nationwide survey: The domains identified in Phase 1 will be operationalised into an online survey to assess whether the identified priorities are shared by individuals living with MSK conditions beyond the Citizen Science Board. The survey will serve to validate and prioritise the identified themes across a broader population. The survey will be distributed nationwide in Switzerland. This broader distribution will help capture a diverse range of perspectives and enhance the generalisability of findings. The survey will include a combination of closed and open-ended questions. Participants will be asked to rank the importance of each domain using a Likert scale (e.g., 1 to 5) and will have the opportunity to provide priorities not previously captured. Subsequently, the second workshop – held online with simultaneous translation support – will convene the full CSB from all language regions. In this workshop the CSB will reflect on the survey findings to consider whether any domains should be revised, combined, or expanded in preparation for the final consensus-building phase. (3) Consensus-building and finalising patient-led priorities: A final online workshop will be dedicated on reaching consensus on the most important priorities identified throughout the project. Consensus on the final selection of priorities will be reached through voting and discussion. ≥ 80% of participants voting for inclusion of priorities will be considered as consensus. After each CSB workshop, CSB members will be asked to complete an evaluation questionnaire based on the SCTO PPI Contributor Feedback form. These evaluations will be used to refine facilitation and ensure that participants remain engaged and supported throughout the project. Additionally at the end of the project, they will be asked to fill out the 4Pi Involvement Experience Questionnaire, as it fits best to evaluate a workshop-based engagement process. CSB members may withdraw from the project at any time and without providing a reason. What members have contributed to the project until then cannot be withdrawn because of the nature of the project. If a CSB member is unable to attend the 2nd or 3rd workshop, they will be given the opportunity to provide inputs regardless, where feasible. The first workshop is mandatory for joining the 2nd and 3rd workshop, therefore CSB members will not be replaced. Data from the three Citizen Science Board workshops will be analysed using the thematic analysis approach described by Braun and Clarke.26 This method allows the identification of both explicit content and underlying patterns. Survey data will be analysed descriptively, with subgroup analyses where relevant. For each domain, the distribution of Likert scale ratings will be summarised with means and standard deviations. Open-ended survey responses will be analysed thematically and integrated with quantitative findings to provide a comprehensive understanding. As this project does not collect or analyse health-related personal data to study diseases or the human body, the Human Research Act does not apply. An inquiry on clarification has been submitted to the ethics committee. The project presents minimal risk to CSB members and are limited to potential emotional discomfort when sharing personal experiences of living with MSK pain. These risks are mitigated through small and confidential breakout group work formats and the option of anonymous inputs. No further risks are anticipated. CSB members may directly benefit from empowerment and meaningful involvement as Citizen Scientists. Potential indirect benefits include the generation of a patient-centred MSK research agenda with potential to improve the relevance and impact of future MSK research in Switzerland and will lay a groundwork for a national MSK Health Registry. Upon project completion, all identifiable participant data will be handled in accordance with applicable data protection legislation. Workshop audio recordings will be deleted.