Willingness to participate in a personalized health cohort – Insights from the Swiss Health Study pilot phase

Abstract

Background This paper explores the feasibility of establishing a personalized health cohort by assessing potential participants’ needs, expectations, and concerns. Methods Employing a participatory approach, we utilized a scenario-based questionnaire in the Swiss Health Study pilot phase (2020-2021involving 1349 adults aged 20–69 from the cantons Vaud and Bern. We conducted descriptive statistics supported by R and qualitative content analysis for open responses related to attitude towards research. We highlight the benefits and challenges of the scenario-based approach, discuss the sample represented in the pilot phase, and implications for building a full cohort, and present participants’ attitudes towards and previous experience with health research. We analyze references regarding informed consent and feedback, attitudes towards a Swiss Health Study, and recommendations on how to improve its scope, design, and instruments. Results Results indicate a high interest (90%) in participating in a national health study, with 85% of a random population sample willing to join a long-term cohort. Only 43% were familiar with biobanks, and 44% preferred general consent. Trust was high for Swiss-based public research but lower for researchers outside the country or in the private sector. Over 95% expressed willingness to complete online questionnaires, undergo physical examination, and donate biosamples. Almost all participants wanted to know the outcomes of medical visits (99.5%), and environmental exposure assessments (95%). Preferred tools for monitoring sleep, physical activity, and diet were known smartphone apps with automatic data management. Conclusion Overall, the study reveals a positive attitude towards personalized health research, with a strong willingness to share data and samples. Key insights focus on informed consent variations, cohort participation and representativeness, and the significance of personalized feedback —especially regarding environmental health concerns. Findings emphasize participants’ supportive yet reflexive stances, underscoring the importance of aligning research values with individual values in personalized health research. These insights contribute valuable considerations for refining the scope, design, and instruments of future cohort studies.