Citizen Science

The National Research Data Infrastructure for Personal Health Data (NFDI4Health) set up four citizen science projects. The goal is to reduce hesitance in data use through intensive exchange with interested citizens and by demonstrating the opportunities it offers.

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.

"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-Institut für Präventionsforschung und Epidemiologie – 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."

The National Research Data Infrastructure for Personal Health Data (NFDI4Health) set up four citizen science projects

ORIENTATE

Citizen Science: patient organizations as
(co-)founders of data registries. A pilot project for the in-depth research participation of their membership.

Making Sense of my own Health Data

A Citizen Science Approach to Personal Health Tracking

PARES

Patient-centered development of appropriate forms of communication of scientific results to participants in clinical trials.

MIKA

Citizens work with scientists to develop a questionnaire on willingness to participate in epidemiological studies.