Participation plays a central role for NFDI4Health – it strengthens patient-centred health research by deliberately incorporating the perspectives of citizens, patients, and those affected. Participation means that people outside of academia are involved in and help shape certain stages of the research process. NFDI4Health actively promotes this approach: four research projects in the field have been funded, and the research dialogue portal ResearchDialogue has been established to facilitate exchange between science and the public. Another important measure is the inclusion of patient representatives on the User Advisory Board of NFDI4Health. Their voices contribute to the strategic development of the initiative. In this way, NFDI4Health supports health research that is oriented towards the real needs and experiences of people.

As part of the call for proposals “Citizen Science, Participatory Quantitative Research, and Knowledge Transfer,” NFDI4Health has awarded a total of €100,000 in funding to four research projects in the fields of participation and citizen science in 2023:

In patient organisations, people affected by specific illnesses come together. They advocate for the interests of those impacted and contribute valuable knowledge – for example, about digital aids like medication apps or blood sugar sensors. Unfortunately, their ideas are often not sufficiently considered in research. A new position paper explains how this can be changed: through more collaboration, training, and financial support. This way, digital solutions can be developed that truly meet the needs of those affected. Read the full position paper [here].

Soltani N, Dietz T, Ochterbeck D, Dierkes J, Restel K, Christianson L, De Santis KK, Zeeb H. Digital information exchange between the public and researchers in health studies: Scoping review. Journal of Medical Internet Research. 2025;27e63373. https://doi.org/10.2196/63373