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From self-tracking with digital tools to co-designing clinical studies, participation is transforming the health landscape - empowering individuals to shape research, share data, and influence personal and global health decisions. This blog explores how Citizen Science is revolutionizing health research and driving innovation.
Author: Rosy Mondardini
Citizen and patient engagement in health research has a long and evolving tradition, with individuals outside the professional medical and research communities playing various roles in shaping health-related knowledge. However, patients and the broader public were often viewed primarily as passive subjects of research studies or as recipients of health services rather than as active contributors to the research process.
Over time, the perspective on participation in health research has shifted significantly, with a growing recognition of the value of involving patients not just as subjects but as collaborators in setting research agendas and making decisions about healthcare priorities. As a result, several participatory approaches have emerged to incorporate patients and the public into various stages of health research and healthcare decision-making, e.g. participatory health research (PHR), patient and public involvement (PPI), community-based participatory research (CBPR), and more. Each of these models represents different ways of ensuring that the voices of patients and citizens are heard and valued in the research and healthcare landscape. Despite this growing emphasis on patient involvement though, the concept of Citizen Science has only recently started to gain traction and formal recognition. In 2017, an editorial of the International Journal of Epidemiology called Citizen Science in health research “a bold approach”.
Indeed, the incorporation of active citizen engagement in biomedical research represents an important shift in the traditional model of knowledge production. A concrete step towards the democratization of science, Citizen Science means engaging in patient-centric research practices where people contribute valuable insights, perspectives, and lived experiences, blurring boundaries between professional scientists and the public.
The nature of the contributions by the increasing number of patients and healthy citizens alike taking part in biomedical research varies widely.
While the majority of participation still occurs within the framework of traditional research—where individuals volunteer “to be researched” —there is a growing trend of non-professionals actively contributing in more direct and collaborative roles. In many initiatives, participants are sharing decision-making power with professional researchers and engaging in key aspects of the research process, including setting the research agenda, designing studies, acquiring funding, and selecting methodologies. Some participants serve as advisers in the development of clinical trials, ensuring that studies align with patient needs and priorities.
In some cases, participation may involve contributing personal health data to research projects led by professional scientists, enriching datasets that would otherwise be difficult to compile. In other cases, volunteers themselves lead the entire research initiative investigating potential treatments for their own conditions. The practice of making individual lifestyle changes and investigating potential treatments for health self-management is not a new phenomenon. What distinguishes contemporary efforts from those of the past is the transformative impact of digital health technologies (e.g., wearable devices, patient social networks, and personal genome sequencing) enabling self-tracking and real-time data sharing. Today, individuals can adopt health-related behaviours and broadcast them to a global audience, engaging with - and learning from - others who share similar interests. Health social networks provide communities of knowledge and support that transcend geographical boundaries.
Although diverse in nature, ‘Citizen Science,’ ‘Participatory Research,’ and ‘Patient-led Research’ are often used interchangeably. This is largely due to the lack of a precise, universally accepted definition of Citizen Science, which encompasses various participatory models that engage non-professionals as collaborators in scientific research.
While health is often thought of in a physical or health care context, its meaning is much broader. Health refers not only to the absence of illness, but also, as defined in the 1946 Constitution of the World Health Organization, “a state of complete physical, mental, and social well-being.” Improving health requires attention to all three of these parts, as well as equal emphasis on prevention and care.
Global health is a field that focuses on enhancing health and ensuring equitable healthcare access for all people worldwide. It prioritizes transnational health challenges (e.g. infectious diseases and noncommunicable diseases), their causes, and potential solutions while fostering interdisciplinary collaboration within and beyond the health sciences. The current ongoing efforts for achieving health and well-being for all, as exemplified by the Sustainable Development Goals (SDGs) and the World Health organization’s (WHO) Triple Billion Targets, depends on informed decisions that are based on data collection and monitoring efforts. Even though data availability has been increasing in recent years, significant gaps remain.
Citizen Science can efficiently and sustainably help address data gaps by expanding data collection, and fostering community-driven solutions, and play a key role in monitoring health, promoting well-being, and mobilizing action. Out of 58 indicators related to health in the SDGs and Triple Billion Targets, Citizen Science could potentially contribute to monitoring 48, primarily at local and community levels, with the potential to scale up to national and global health monitoring efforts.
While there is a consensus that Citizen Science for health differs from its application in other domains, e.g. ecology or astronomy, there is not at present a clear and comprehensive overview of the particularities that distinguish health-related Citizen Science efforts, their unique challenges, and the needs of all stakeholders involved.
A few things we know. In health-related projects, participants often have a direct, personal connection to the subject—either as patients, caregivers, or advocates. In some cases, this makes them at the same time researchers and subject of the research.
Health data is highly personal and sensitive, requiring strict confidentiality measures. Health-related Citizen Science is subject to strict ethical guidelines, privacy concerns, and regulatory oversight, such as data protection laws (e.g., GDPR, HIPAA) and clinical research standards. Also conducting self-experiments, developing treatments, or engaging in do-it-yourself (DIY) biology, raises ethical and safety considerations that are not typically present in other domains.
Health Citizen Science is often intertwined with patient advocacy, pushing for more patient-centred research and healthcare improvements. Unlike fields like ecology or astronomy which primarily focus on expanding scientific knowledge, health Citizen Science frequently interacts with institutional stakeholder (medical institutions, pharmaceutical companies, healthcare providers) that can influence policies that directly affect participants' well-being.
On 6-7 Nov 2025, practitioners and representatives from all stakeholders will gather in Zurich for two days to share the latest in the field. During the intense programme of the “Citizen Science for Health” conference, participants will share their methods and results, discuss and collaborate on issues and challenges, and hear other people experiences and (success) stories. The community is confident that - in whatever form patient and citizen participation in the health research domain presents itself - citizen involvement and digital solutions for (personal) data collection will revolutionise the way innovation takes place in all aspects of health.
Join the event to learn about the latest advancements in the field, and submit an abstract to share your experience! To the conference website
