Health Social Labs
for Stakeholder Engagement and Citizen Science
In the HEREDITARY project, Health Social Laboratories (HSLs) are a key tool for Stakeholder Engagement and Citizen Science, designed to bring together patients, clinicians, researchers, caregivers, policymakers, and health professionals in collaborative sessions. These half-day, in-person workshops are held across different countries and institutions to reflect local health realities and ensure diverse perspectives.
HSLs are built around three thematic pillars—technology, terminology, and social and ethical issues—which are explored in small-group discussions guided by trained facilitators. Participants contribute with their experiences, expectations, and concerns related to brain health, neurodegenerative diseases, and digital health innovations. These insights help shape the HEREDITARY research process and the design of future tools, such as interactive data platforms and accessible medical terminology.
Through the Health Social Laboratory methodology, HEREDITARY is not only advancing research—it is co-creating meaningful solutions with those who are most impacted.
HSL Events in HEREDITARY
Insights from the Health Social Labs
Technology
- Concerns about unequal access due to digital skill gaps, particularly among older patients.
- Need to include lived experiences in data collection and promote standardization and sharing of clinical data, currently limited by privacy regulations.
- Discussed opportunities and risks of wearables and telemedicine.
Terminology
- Calls for clearer, more patient-friendly language in medical communication.
- Emphasis on adapting communication to individual needs and respecting the patient’s right to know or not know.
- Highlighted the need for harmonized practices in multidisciplinary teams.
Ethics
- Emphasized the importance of early discussions on palliative care.
- Advocated for multi-actor participation in research and better public understanding of data sharing.
- Suggested involving patient representatives in ethics committees.
Access here to the first report of the HSLs activities carried out
Methodology
The HEREDITARY Health Social Laboratory (HSL) model was designed to foster meaningful, inclusive dialogue between science and society. Its development followed a three-step process combining academic research, partner insights, and practical methodology building.
GROUNDED IN RESEARCH
A thorough literature review on participatory research and stakeholder engagement helped identify key trends, challenges, and best practices. This formed the evidence-based foundation of the HSL model.
INFORMED BY THE EXPERTS
Semi-structured interviews were conducted with 9 HEREDITARY researchers and clinicians across Italy, Spain, the Netherlands, and the US. These conversations explored how each institution approaches technology, research, and communication, helping tailor the model to real-world settings.
BUILT FOR FLEXIBILITY AND IMPACT
The final HSL methodology was designed to be adaptable, inclusive, and easy to replicate. It considers challenges such as scheduling, diversity of perspectives, and the need for constructive feedback. Solutions include flexible formats, clear communication tools, and an iterative design approach that evolves with stakeholder input.
Together, these steps shaped a dynamic engagement model that empowers participants to contribute directly to HEREDITARY’s research process—making innovation more collaborative, transparent, and socially grounded.
Click on the button below to access Deliverable 6.1, which includes the guidelines for applying the Health Social Labs methodology.