- Convenors:
-
Beatriz Noriega Ortega
(ECSA)
María Luisa Alvarez-Malé (Universidad de Las Palmas de Gran Canaria)
Chrysanthi Bairaktari (European Citizen Science Association)
Send message to Convenors
- Chair:
-
Beatriz Noriega Ortega
(ECSA)
- Format:
- Panel
Short Abstract
This panel explores how citizen science and co-creation can transform health innovation by involving diverse stakeholders across borders. It highlights inclusive, transdisciplinary approaches to improve relevance, usability, and equity in health research.
Description
How can citizen science and participatory research transform health innovation through co-creation across borders—disciplinary, national, organisational, or cultural? This panel invites contributions that explore how involving diverse publics and stakeholders in the design, development, and evaluation of health-related research and innovation can lead to more innovative, inclusive and context-sensitive outcomes.
Focusing on the health domain, the session will examine how co-creation processes help bridge divides between experts and non-experts, institutions and communities, and different cultural or national approaches to healthcare. It will address how citizen science can be used to shape health research and innovation at every stage—from conceptual design to clinical implementation—particularly in cross-border or transdisciplinary settings.
The discussion will include examples of collaborative research involving patients, healthcare professionals, and community members as active partners. It will consider how co-creation can challenge health methods, navigate institutional complexity, and enable mutual learning across diverse backgrounds. For instance, the STRATUM project—a European initiative developing a 3D neurosurgical decision-support tool—applies a co-creative approach involving neurosurgeons and relevant stakeholders from different countries to ensure relevance and usability in real-world surgical settings.
This panel aims to contribute to the broader conference theme by reflecting on the potential of citizen science to foster more inclusive, responsive, and innovative health research. It will provide a space to explore both the opportunities and challenges of participatory approaches in complex, high-stakes research environments.
Accepted papers
Short Abstract
The STRATUM project applies a co-creative approach involving multiple stakeholders from different countries to ensure relevance and usability in real-world surgical settings. This presentation will focus on the co-creation journey of the STRATUM tool, which will help advance brain tumour surgery.
Abstract
STRATUM is a 5-year European project which aims to develop an innovative 3D decision support tool based on a co-creation process. This is a novel neuro-navigation system for brain tumour surgery guidance and diagnostics, featuring a touchless 3D Graphical User Interface that enhances surgical precision and safety. It integrates real-time brain models and artificial intelligence-based decision support via gesture or voice control. Designed for efficiency and usability, STRATUM offers intuitive interaction, setting a new standard in neurosurgical technology. The accuracy in the identification of tumour areas and the real time elaboration performance are achieved through a highly specialised camera system and a powerful and heterogeneous high performance computing platform.
Co-creation is critical in STRATUM: neurosurgeons and other stakeholders are key contributors to the design, development and testing of the STRATUM tool. Through co-creation workshops and different techniques, neurosurgeons and other end-users provide valuable feedback on their needs in the surgical room and the usability of the Graphical User Interface. In a later stage, they will test the tool in clinical studies across Europe.
This presentation will share insights from this co-creation process of the STRATUM project that has started from the beginning of the project.
Short Abstract
Exploring technology and data ethics issues in health settings across different countries through the Health Social Laboratory stakeholder engagement model, our paper analysis underpins the value of cross-national dialogue for fostering relevant engagement in technology-driven health environments.
Abstract
This paper explores the Health Social Laboratory (HSL) stakeholder engagement model as a framework for analyzing how technology and data ethics are addressed in neurodegenerative diseases health settings across different countries and regions. The study is based on a comparative thematic analysis of three laboratory discussions – two in Italy and one in the Netherlands – that engage health stakeholders such as clinicians, researchers, patients, caregivers, and policy experts, in the exploration of technological and ethical implications of health data management and research.
The comparative perspective guides the analysis through the thematic coding of the three laboratory discussions. Labels are created to help understand how data treatment and ethical concerns are expressed across different local realities. By comparing Italian and Dutch cases, we aim to identify points of convergence, such as shared attention to patient privacy or data security, as well as divergences that may stem from national policy frameworks, institutional cultures, or participatory traditions.
This study highlights shared challenges and context-specific strategies to address technological and ethical issues of health data management and research, points to the value of cross-national dialogue for refining ethical frameworks in technology-driven health environments, and contributes to ongoing discussions on how institutions (particularly health ones) can foster relevant engagement within health research and innovation.
Short Abstract
This presentation explores how patients with rare diseases, as co-creators, are transforming research innovation through participatory research, driving AI-based tools, data collection, and transnational collaboration to bridge diagnostic gaps and foster equitable health solutions.
Abstract
Rare disease resesrch remains a major public health challenge, with over 40% of people living with rare diseases remains undiagnosed and delays often exceeding five years. This presentation highlights how participatory research and citizen science can transform this landscape by positioning patients as co-creators rather than passive subjects.
Drawing from European and national initiative —we illustrate how patients and their family members contribute actively to research innovation. Their roles include establishing and managing disease registries, generating phenotypic and genomic data, identifying undiagnosed cohorts, co-financing studies, and engaging in AI training processes (e.g., facial recognition, variant prioritization).
We explore the impact of these patient-led efforts across borders—disciplinary, national, and institutional—and how they challenge traditional boundaries in biomedical research. Our contribution reflects on the epistemic and ethical implications of such co-creative approaches and argues for formal recognition of patients as knowledge partners in diagnostic ecosystems.
By showcasing participatory infrastructures that integrate patients and their family members at all stages—from data governance to tool usability—we propose a model for more inclusive, efficient, and context-sensitive diagnostic research. We also address the challenges encountered, including data sovereignty, algorithmic bias, and power asymmetries, offering strategies for mutual learning and sustainability in high-stakes, cross-border health innovation.
Short Abstract
A youth-centered co-design framework integrating Gratitude Journaling, Digital Literacy, and Citizen Science to engage teenagers in mental health, fostering emotional awareness, resilience, and community support through co-created digital tools.
Abstract
This paper introduces a youth-centered co-design framework that integrates Gratitude Journaling and Citizen Science to investigate new approaches to adolescent mental well-being. The framework was implemented through a five-day workshop involving 85 Italian high school students, designed to merge emotional reflection with collaborative design and data exploration.
During the workshop, participants engaged in daily gratitude journaling to reflect on positive experiences and emotions, followed by digital literacy seminars, and group co-design sessions aimed at developing mobile app prototypes focused on well-being. This dual process - combining introspection with collective creativity - encouraged students to translate their personal reflections into design ideas with social and civic value. This approach offers a structured yet flexible method for engaging teenagers in critical reflection about their mental well-being and health. It empowers them to interpret personal data, recognize shared well-being patterns, and co-create supportive digital tools that promote empathy, resilience, and active participation within their communities.
The resulting app prototypes demonstrated a variety of design solutions that connect emotional awareness with interactive digital features, including mood tracking systems, gratitude prompts, peer support spaces, and data visualizations that represent community well-being trends. These outcomes highlight how young people can meaningfully link emotional literacy with data-driven thinking, envisioning technologies that promote both self-awareness and social connectedness.
This approach opens new avenues for research, policy, and personal empowerment. For researchers, it offers a scalable, youth-driven method for collecting ecologically valid affective data over time, grounded in authentic, real-life contexts. For policymakers, the aggregated insights emerging from these participatory platforms can support evidence-based decision-making, guiding targeted interventions and resource allocation in schools and youth programs. For individual users, the apps’ sharing and visualization features promote emotional awareness and community connection, helping to normalize fluctuating moods and cultivate a sense of belonging through ambient, data-driven empathy.
Short Abstract
This study demonstrates how participatory action research can help shift nursing home care culture from passivity towards the promotion of physical activity by engaging staff and older adults in co-creating solutions that integrate physical activity into daily routines.
Abstract
In nursing homes, older adults often live passive lives. Physical activity is not perceived as an integral part of daily life, and poor physical environments, limited professional activity promotion, and institutional barriers hinder older adults’ engagement in physical activity. This presentation examines how participatory action research can transform care culture in nursing homes to promote physical activity among older adults. A study was conducted in a Finnish 25-resident nursing home, involving 18 staff members, 17 older adults, and 6 family members in one participatory action research cycle (observe, plan, act, evaluate). Together, they co-designed and implemented three solutions to increase daily physical activity among older adults: afternoon activity groups, a more activating physical environment, and engaging older adults during mealtimes. The process fostered staff learning, teamwork, and bottom-up development of care practices and environments, leading to care culture change. While staff-led initiatives resulted in meaningful changes and increased physical activity, older adults’ involvement remained limited. This was partly due to advanced functional impairments that hindered participation, but also reflected the prevailing institutional model of care. These findings highlight the potential of participatory approaches to bridge the gap between research and practice, enabling context-sensitive, evidence-based innovation in institutional long-term care.
Short Abstract
MicroMundo@Oeiras unites students, teachers, and researchers in antibiotic discovery to fight antimicrobial resistance (AMR). Through citizen science and open data, it advances health innovation, empowering communities and fostering inclusive, transdisciplinary action against global AMR threats.
Abstract
MicroMundo@Oeiras is a citizen science project integrated into the international Tiny Earth network, addressing the global challenge of antimicrobial resistance (AMR), one of the greatest threats to public health, responsible for millions of deaths each year. Because soil microorganisms are prolific sources of natural antibiotics yet difficult to survey at scale, MicroMundo mobilizes high-school, undergraduate, and master’s students - together with teachers and researchers - to discover antibiotic-producing bacteria from local environments. Participants receive structured training and follow standardized protocols that couple theory with hands-on work, building scientific literacy and trust while generating actionable data. In Portugal, MicroMundo began in 2018 at the University of Porto (MicroMundo@UPorto), where >200 soil samples were processed and 80 isolates with antimicrobial activity identified. In 2024, the initiative expanded to Oeiras under ITQB NOVA’s Ciência + Cidadã program, in partnership with the Oeiras Municipality and two ITQB NOVA laboratories, with a focus on detecting AMR hotspots. To date, MicroMundo@Oeiras has screened >750 bacterial isolates collected by citizen scientists, identifying 15 with antimicrobial activity for downstream characterization (to determine whether they produce new or known compounds). In parallel, 159 antibiotic-resistant isolates have been recorded, and all open data are available via the Oeiras Interativa platform. Monitoring soil resistomes provides insight into how resistance emerges and spreads. The program has already yielded two scientific publications, including a FEMS Microbiology Letters article co-authored by citizen scientists, and equips students with a practical understanding of how antibiotics work, what drives resistance, and how everyday behaviors influence AMR.