"In the long term, we want NFDI4Health to help keep people healthy and fight disease more effectively. To do this, we need to work with sensitive health data. It is therefore important to us to inform the public about the opportunities that lie in the scientific use of personal health data," explains Prof. Dr. Juliane Fluck, spokesperson for the NFDI4Health and program area manager "Knowledge Management" at ZB MED - Information Center Life Sciences.
Citizen science describes a research approach in which scientific knowledge is generated by people who do not work full-time in science - with or without the participation of full-time researchers.
The four projects launched by NFDI4Health with partners:
- "Making sense of my own health data - a citizen science approach to personal health tracking" - Partner: OFFIS, Oldenburg.
- "MIKA: JOINT RESEARCH WITH KORA - citizens and scientists develop a questionnaire on willingness to participate in epidemiological studies" - Partner: Helmholtz Center, Munich, Germany
- "Patient-centered development of appropriate forms of communication of scientific results to participants in clinical trials" - Partner: Experimental and Clinical Research Center, Berlin
- "Citizen Science: patient organizations as co-founders of data registries. A pilot project for in-depth participation of their membership" - Partner: University of Applied Sciences, Hamburg.
"Citizen Science projects have many exciting aspects that classical science often lacks," explains Prof. Dr. Hajo Zeeb, co-leader of the Community & Networking Task Area at NFDI4Health and head of the Department of Prevention and Evaluation at the Leibniz Institute for Prevention Research and Epidemiology - BIPS in Bremen. He adds: "By working with volunteers, scientists gain many new perspectives on their own field of research. In addition, citizen science projects strengthen the community by bringing together people from different backgrounds and interests. I think they are immensely important, especially in the context of health research."
NFDI4Health is part of the National Research Data Infrastructure (NFDI) funded by the federal and state governments. NFDI4Health aims to build a comprehensive inventory of German epidemiological, public health, and clinical trial data. The collection and analysis of these data are essential to the development of new therapies, comprehensive approaches to care, and preventive measures. Personal health data require special protection. The declared goal of NFDI4Health is therefore to combine security and usability. The consortium is made up of 17 partners from various disciplines. A total of 48 renowned institutions from the healthcare sector are involved.