Review of citizen science value in Dutch atrial fibrillation health community

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Frontiers in Medicine Published April 18, 2026 Medically reviewed April 25, 2026 Study authors: Myrthe F. Kuipers, Maurice L. Remy, Amélie C. T. Collinet, Kennedy Silva Ramos, Carina A. C. M. Pitt… DOI ↗ By Dr. Amelia Tan, PhD · Internal Medicine & Chronic Disease

Key Takeaway

Note that citizen science approaches show early value for AF research but lack quantitative outcome data.

This narrative review evaluates the citizen science approach utilized within the Dutch CIRCULAR model and the online health community of the AFIP foundation. The scope of the review focuses on people with atrial fibrillation and their families, highlighting the integration of co-creation with citizens and patient involvement in research settings. The source is a review rather than a primary trial, and no specific sample size or study population details are provided in the input data.

The main synthesized finding indicates that early activities have demonstrated the value of this approach. The review does not report specific effect sizes, absolute numbers, p-values, or confidence intervals regarding the primary or secondary outcomes. Consequently, the evidence regarding the magnitude of benefit remains qualitative based on the available text.

Safety data, including adverse events, serious adverse events, discontinuations, and tolerability, were not reported in the source material. The review also does not specify a comparator group or a defined follow-up period for the initiatives discussed. These limitations prevent a detailed assessment of risk or long-term efficacy.

The practice relevance of this review is that it provides lessons for future participatory initiatives in complex chronic disease research. Clinicians should interpret these findings as qualitative insights into engagement models rather than quantitative evidence of clinical efficacy. The authors acknowledge that the certainty of these conclusions is limited by the absence of reported statistical data and specific outcome metrics.

Study Details

Study typeSystematic review

EvidenceLevel 1

PublishedApr 2026

View Original Abstract ↓

Citizen science is a transformative approach to advancing health research by bridging the gap between researchers and the public. The Dutch CIRCULAR model, which addresses atrial fibrillation (AF), the most common cardiac arrhythmia worldwide, offers a unique example of applying citizen science in biomedical and public health research. The project was established to systematically include people with AF and their families as partners in research, ensuring that their lived experiences inform priorities, study designs, and interventions. A central role is played by the online health community of the AFIP foundation, which engages the AF community through blog articles, forums, social media, and outreach campaigns. These activities stimulate dialogue, enhance health literacy, empower individuals to contribute hypotheses and solutions, and function as a marketing strategy to attract and retain diverse participants. By sharing outcomes through open-access formats and direct communication with participants, CIRCULAR creates a feedback loop between citizens and researchers that fuels new research directions in AF. Early activities have demonstrated the value of this approach. Patient-reported triggers and suppressors of AF episodes, including psychological stress and lifestyle factors, informed laboratory investigations and led to the co-design of clinical interventions such as dietary programs. These examples illustrate how co-creation can shape both preclinical and clinical research as well as citizen and student education. This review discusses how citizen science is conceptualized and implemented in the CIRCULAR model, presents ongoing and future activities, and reflects on the added value of patient involvement for public health and biomedical innovation. By embedding citizens throughout the research process, and actively engaging them through targeted outreach, CIRCULAR advances patient-centered innovation, strengthens empowerment and health literacy, and provides lessons for future participatory initiatives in complex chronic disease research.