Willingness to participate in a personalized health cohort - insights from the swiss health study pilot phase.
Description
Nolwenn Bühler and Annika Frahsa contributed equally to this work.
Publisher DOI
PubMed ID
39112992
Abstract
BACKGROUND
This paper explores the feasibility of establishing a large-scale population-based cohort and biobank in Switzerland by assessing potential participants' needs, expectations, and concerns about such an infrastructure providing information on health, lifestyle, and exposure trajectories, the development of disease, and risk factors over time.
METHODS
We utilized a scenario-based questionnaire in the Swiss Health Study pilot phase (2020-2021), involving 1349 adults aged 20-69 from the cantons Vaud and Bern. We conducted descriptive statistics supported by R and qualitative content analysis of n = 374 open responses related to attitudes towards research.
RESULTS
We highlight the benefits and challenges of the scenario-based approach, discuss the sample represented in the pilot phase, and present implications for building a full cohort. We also report on participants' attitudes towards and previous experience with health research. We analyze references regarding informed consent and feedback, attitudes towards the Swiss Health Study, and recommendations on improving its scope, design, and instruments. 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 from other countries or 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 the medical tests (99.5%) and the exposure to environmental stressors (95%) from their study center visit. 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 the meaning of informed consent for participation, the relevance of sampling and representativeness, as well as the significance and challenges 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.
This paper explores the feasibility of establishing a large-scale population-based cohort and biobank in Switzerland by assessing potential participants' needs, expectations, and concerns about such an infrastructure providing information on health, lifestyle, and exposure trajectories, the development of disease, and risk factors over time.
METHODS
We utilized a scenario-based questionnaire in the Swiss Health Study pilot phase (2020-2021), involving 1349 adults aged 20-69 from the cantons Vaud and Bern. We conducted descriptive statistics supported by R and qualitative content analysis of n = 374 open responses related to attitudes towards research.
RESULTS
We highlight the benefits and challenges of the scenario-based approach, discuss the sample represented in the pilot phase, and present implications for building a full cohort. We also report on participants' attitudes towards and previous experience with health research. We analyze references regarding informed consent and feedback, attitudes towards the Swiss Health Study, and recommendations on improving its scope, design, and instruments. 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 from other countries or 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 the medical tests (99.5%) and the exposure to environmental stressors (95%) from their study center visit. 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 the meaning of informed consent for participation, the relevance of sampling and representativeness, as well as the significance and challenges 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.
Date Issued
2024-08-07
Publication Type
Article
Subjects
Attitudes towards research Biomonitoring Informed consent Scenario-based approach Trust in science
Language(s)
en
Author(s)
Bühler, Nolwenn | |
Bourqui, Réjane Morand | |
Nusslé, Semira Gonseth | |
Zuppinger, Claire | |
Bochud, Murielle | |
von Goetz, Natalie |
Journal
BMC Public Health
Publisher
BioMed Central
ISSN
1471-2458
Funding(s)
Access(Rights)
open.access