NDLI: Willingness to participate in a personalized health cohort – insights from the swiss health study pilot phase

Content Provider	Springer Nature : BioMed Central
Author	Bühler, Nolwenn Frahsa, Annika Jaramillo, Nathalia González Bourqui, Réjane Morand Nusslé, Semira Gonseth Zuppinger, Claire Bochud, Murielle von Goetz, Natalie
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.
Related Links	https://bmcpublichealth.biomedcentral.com/counter/pdf/10.1186/s12889-024-19650-z.pdf
Ending Page	13
Page Count	13
Starting Page	1
File Format	HTM / HTML
ISSN	14712458
DOI	10.1186/s12889-024-19650-z
Journal	BMC Public Health
Issue Number	1
Volume Number	24
Language	English
Publisher	BioMed Central
Publisher Date	2024-08-07
Access Restriction	Open
Subject Keyword	Public Health Medicine Epidemiology Biostatistics Vaccine Environmental Health Scenario-based approach Informed consent Attitudes towards research Trust in science Biomonitoring Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health
Journal Impact Factor	3.5/2023
5-Year Journal Impact Factor	3.9/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Willingness to participate in prevention programs for cardiometabolic diseases

Social capital and willingness to participate in COVID-19 vaccine trials: an Italian case-control study

The informed consent in Southern Italy does not adequately inform parents about infant vaccination

Patients’ understanding of telemedicine terms required for informed consent when translated into Kiswahili

Willingness of female sex workers in Kampala, Uganda to participate in future HIV vaccine trials: a case control study

Contextualizing willingness to participate: recommendations for engagement, recruitment & enrolment of Kenyan MSM in future HIV prevention trials

Impact of gender on the decision to participate in a clinical trial: a cross-sectional study

A telephone survey of factors affecting willingness to participate in health research surveys

Barriers and willingness to express consent to organ donation among the Kazakhstani population

Willingness to participate in a personalized health cohort – insights from the swiss health study pilot phase

Similar Documents

Willingness to participate in prevention programs for cardiometabolic diseases

Social capital and willingness to participate in COVID-19 vaccine trials: an Italian case-control study

The informed consent in Southern Italy does not adequately inform parents about infant vaccination

Patients’ understanding of telemedicine terms required for informed consent when translated into Kiswahili

Willingness of female sex workers in Kampala, Uganda to participate in future HIV vaccine trials: a case control study

Contextualizing willingness to participate: recommendations for engagement, recruitment & enrolment of Kenyan MSM in future HIV prevention trials

Impact of gender on the decision to participate in a clinical trial: a cross-sectional study

A telephone survey of factors affecting willingness to participate in health research surveys

Barriers and willingness to express consent to organ donation among the Kazakhstani population

Willingness to participate in a personalized health cohort – insights from the swiss health study pilot phase