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This PlayDecide kit explores how citizens, patients, researchers, and policymakers can collaborate to improve health and well-being through citizen science.

Author / translator Kai-Ti Wu

This PlayDecide kit explores how citizens, patients, researchers, and policymakers can collaborate to improve health and well-being through citizen science. From air quality monitoring to patient-led research and digital health apps, the stories and issues highlight real opportunities — and real dilemmas — around data sharing, ethics, inclusion, and trust.

Developed by the Citizen Science for Health (CS4Health) community, this kit invites participants to discuss and co-create new examples of citizen participation in health research. The goal is to reflect on how citizen-generated data can inform healthier, fairer, and more democratic societies.

Created 4 November 2025

Last edited 4 November 2025

Topics Health

Policy positions

Policy position 1

Citizen science should be a central part of public health research and policymaking. Citizen-generated data is as valuable as institutional data when properly supported.

Policy position 2

Citizen science can strengthen health research, but only when clear standards and ethical safeguards are in place for data quality, privacy, and inclusion.

Policy position 3

Citizen science is useful for awareness and education, but its data should remain separate from formal health research and policy decisions.

Policy position 4

Health data collection should remain strictly within professional research institutions. Citizen participation risks misinformation, privacy violations, and unreliable results.

Story cards

Marta lives near a busy road and suffers from asthma. She joins a community air-quality project using low-cost sensors. When her group’s data shows pollution spikes that contradict official figures, authorities dismiss it — until journalists report on it. Marta feels both empowered and exhausted by the process.

The Air We Breathe

Luca, a diabetic patient, shares his glucose data with a citizen science project testing new insulin prediction algorithms. Later, he learns his anonymized data was reused by a private company. He wonders whether he truly consented — or just clicked through terms he didn’t understand.

The Blood Sugar App

Volunteers in a mental health project log their emotions in public spaces. The resulting “mood map” shows clear links between stress and lack of green areas. While the data gains attention from city planners, some participants worry their emotions are being turned into statistics without their say.

Mapping Mood in the City

Parents of children with a rare condition build an online registry to pool medical data and attract research interest. When a biotech company offers to sponsor the platform, the group is divided — some see hope for treatment, others fear commercialization.

The Rare Disease Collective

INFO CARDSISSUE CARDS

Who Owns Citizen Health Data?

When citizens contribute health data, who should have control over its storage, sharing, and reuse — the individuals, the community, or the researchers? Ownership determines power, consent, and benefits.

What Counts as Trustworthy Data?

Should “data quality” depend only on accuracy and validation, or also on openness, participation, and ethics? Citizen data may be imperfect but socially meaningful — can both kinds of value coexist?

Balancing Openness and Privacy

Open data can accelerate research and transparency, but health information is sensitive and personal. How can citizen science projects protect privacy while promoting openness?

Equity in Participation

Who gets to participate in citizen science for health — and who is left out? Projects risk amplifying existing inequalities unless inclusion is actively designed and resourced.

What Is Citizen Science for Health?

Citizen science for health involves people contributing to health research, data collection, or decision-making outside traditional institutions. Participants can use sensors, apps, or community monitoring to track environmental exposures, symptoms, or well-being. The goal is to democratize science and make health research more relevant to everyday life.

Ethical and Legal Safeguards

Health-related citizen science must follow strong ethical guidelines. Participants should understand how their data will be used, who has access, and whether it can be shared or reused. GDPR and informed consent are key frameworks, but community trust and transparency go beyond legal compliance.

Data Quality and Validation

Citizen-generated data can reveal patterns missed by official studies, but it may vary in accuracy or completeness. Combining community data with professional research can increase both rigor and local relevance. Validation should focus not only on precision but also on transparency and reproducibility.

Inclusion and Accessibility

Digital tools make participation easier for some but harder for others. Barriers include language, internet access, and digital literacy. Inclusive design and community partnerships help ensure that citizen science for health reflects diverse voices and does not reinforce existing inequalities.

Policy and Institutional Recognition

Despite growing success stories, citizen-generated data is still rarely used in official health or environmental policy. Institutional barriers, lack of trust, and unclear standards often prevent integration. Building shared frameworks could help bridge the gap between citizen action and formal evidence.