Participatory Research and Citizen Science

Citizen science, community science, participatory research, transdisciplinary research – all of these terms are related: They describe the active participation of individuals, groups and organisations from outside the academic system in scientific investigations and processes. Participatory research is the umbrella term for all research approaches in which scientific issues are researched within the framework of a partnership between science, members of civil society and, where applicable, practical institutions. Civil society participation can take place at different points in the scientific process with varying intensity and using different formats. The participatory research landscape is broad-based and encompasses various approaches and traditions. These approaches not only share the common goal of bringing science and society closer together, but also central practical research values such as openness and clarity. In addition to citizen science (focus on knowledge generation and citizen participation, see below), the field of participatory research also includes transdisciplinary research (solving practical problems through collaboration between several disciplines and members of civil society) and transformative research (science and members of civil society jointly initiate change processes).

Helpful information for further reading:

Information from the American Association for Advancing Participatory Sciences (AAPS)

Participatory Research Strategy of the Federal Ministry of Education and Research (BMBF, German Only)

Citizen science is currently perhaps the best-known subtype of participatory research. Citizen science involves the active participation of citizens and/or civil society organisations in various phases of the research process. Participation ranges from the development of a research project to data collection and analysis to the communication of research findings. Joint research between scientists and citizens and/or civil society organisations is open to everyone: People of different ages, genders, social backgrounds, knowledge expertise and perspectives can participate in the research. Academic training is not a prerequisite for participation in citizen science projects. Together with the full-time scientists, the “citizen scientists” formulate research questions, collect and evaluate data and documents, observe animals, analyse their own dialect, comment on historical text collections, provide their own archives and co-author scientific publications. The co-researchers from civil society get involved locally or contribute digitally, e.g. via special apps. Such collaborations can not only lead to new scientific projects and findings, but also enable a dialogue between science and society on an equal footing.

Helpful information for further reading:

German citizen science platform "mit:forschen"

FAQ of the European Citizen Science Association

The Public Engagement Unit would be pleased to support and advise you in all matters relating to participatory research and citizen science. Our support services include the “Bürgeruniversität in der Forschung” (Citizens’ University in Research) funding programme, which has been run regularly since 2019 to finance and provide seed funding for relevant projects, as well as personal advice, information and support (e.g. on further questions, project design/implementation, communication, events or external funding opportunities, including grant application support). If you have any questions or need support with regard to participatory research and citizen science, please contact Dr Julia Stiebritz-Banischewski by phone (+49 211 81-15053) or e-mail (julia.stiebritz-banischewski(at)hhu.de).

“IndI – Innovative Interventions for Discursive Integration” (2023 – 2026): The BMBF project “Innovative Interventions for Discursive Integration (IndI)” is researching how online discourse can be made more inclusive. The project is part of the BMBF-funded “Integrated Research” cluster (the website is only available in German). The project focuses on online discussions, which have increasingly become a part of our everyday lives in recent years. However, the often-poor quality of these discussions makes many people reluctant to get involved. There are also other barriers to access for certain population groups. Interventions based on artificial intelligence (AI) could help improve the quality of online discourse and remove barriers to access. The project team, comprising social scientists and computer scientists, aims to explore this potential. It is pursuing an open science approach that systematically integrates non-scientific stakeholders into the research and development process on the one hand and openly communicates and utilises the results of the research on the other hand. Contacts: Dr Dennis Frieß (coordinator) (dennis.friess(at)hhu.de), Assistant Professor Dr Tobias Escher (tobias.escher(at)uni-duesseldorf.de), Professor Dr Marc Ziegele (ziegele(at)phil.hhu.de).

Clinical study on lower limb preservation by tibial transverse callus distraction in patients with diabetic foot ulcers: concept phase to define roles and strengthen collaboration with patients, family members and caregivers (TTDO- DFU- CoCo) (2025-2026): The BMBF-funded research project, led by the LMU Munich, focuses on a new method to improve the healing of chronic wounds in people with diabetic foot syndrome (DFU). The so-called TTDO method is a surgical procedure to improve blood circulation and stimulate tissue regeneration. The aim of the project is to develop a concept for a future clinical study. The people affected, their relatives and carergivers will be involved in each phase. Active participation will be ensured in different approaches and accompanied by a team from the Institute for Health Services Research and Health Economics at the German Diabetes Center (DDZ). 

Initially, three co-researchers will be recruited, i.e. three patients or patient representatives with research experience who will work closely with the researchers. They receive specific training for the study and support the study planning, for example in the selection of participants, the design of the workshops and the establishment of a patient advisory board. They also help with recruitment, public relations and the economic evaluation of the study.
In order to include the perspective of citizens without research experience, various workshops are also designed and carried out. Patients with diabetic foot ulcers (DFU) and family caregivers, among others, contribute their experiences. They help to discuss treatment approaches, identify patient-relevant results and develop recommendations for the use of the TTDO method.
Additionally, a patient advisory board will be established. This advisory body of patients will continuously monitor the study. Interested parties can apply via the project website or via patient organisations and will be recruited by all project participants. The advisory board develops common goals and tasks for the researchers and ensures a long-term, trusting collaboration.
The contact person at the Institute for Health Services Research and Health Economics for the participatory part is Prof. Dr. Andrea Icks (andrea.icks(at)uni-duesseldorf.de).

Participatory preparation of a systematic review on the influence of diet on risk factors for cardiovascular disease in type 1 diabetes mellitus patients (2024-2026): Diabetes mellitus harbours the risk of developing secondary diseases such as circulatory or cardiac arrhythmias. The project is investigating the influence of diet on cardiovascular risk factors in people with type 1 diabetes mellitus, which can potentially be prevented by certain diets. The aim of the project is to produce a systematic review on this topic. This is to be done with the active participation of citizens with their own expertise in this area. The people are either affected by the disease themselves or have relatives with the disease. 
A total of three co-researchers are supporting the project from the start of the study. Together with a team from the German Diabetes Centre (DDZ), these people are involved in all stages of the review. The project is managed by the Institute of Biometrics and Epidemiology. The partner in this project is the Institute for Health Services Research and Health Economics, which accompanies the co-researchers. This includes, for example, the initial selection of studies, the definition of results that are highly relevant to the everyday lives of the people affected and the dissemination of scientific results. In line with the principles of participatory research, the co-researchers themselves decide how to contribute within the scope of their interests and resources. The Institute for Health Services Research and Health Economics will provide support and moderation. 
The project is funded by the BMBF for one year. The contact person for the entire project is Dr Sabrina Schlesinger (sabrina.schlesinger@ddz.de). The contact person at the Institute for Health Services Research and Health Economics for the participatory part is Prof. Dr Andrea Icks (andrea.icks(at)uni-duesseldorf.de).

REITS - Deprivation of liberty measures for people with intellectual disabilities (2025-2026): Measures that restrict freedom (FEM), such as the use of restraint belts, are regularly used for people with intellectual disabilities. However, these measures can have negative physical and emotional consequences. To date, research has rarely analysed the target group's perspective on the use of FEM.
The project, funded by the Federal Ministry of Education and Research (BMBF), pursues a participatory approach, i.e. people with intellectual disabilities are not only the subject of the research, but are actively involved in the research process. As so-called co-researchers, they will help shape the study together with scientists from the Institute for Health Services Research and Health Economics at Düsseldorf University Hospital from the very beginning. 
Their perspective will also be at the centre of the project. People with intellectual disabilities will be interviewed about how they perceive and experience FEM, what challenges are associated with the use of FEM and how FEM could be reduced or avoided. Subsequently, the interviews will be used to develop solutions for avoiding FEM together with the co-researchers and other interest groups. 
The contact person for this project is Prof Dr Ralph Möhler (ralph.moehler(at)uni-duesseldorf.de).

“MehrWertRevier” (AddedValueDistrict, 2023 – 2025): The “MehrWertRevier” project, funded by the BMUV and the state of NRW, is a sustainability project led by the Consumer Association of North Rhine-Westphalia (Verbraucherzentrale NRW) in cooperation with the Institute for Consumer Studies (Institut für Verbraucherwissenschaften) at HHU. The project aims to promote ecologically sustainable consumption and thus structural change in the Rhine region. The project supports consumers in climate and resource-conserving actions and aims to facilitate sustainable living and commitment. The focus lies in particular on the topics of resource conservation, energy, mobility and nutrition. Three citizen science projects are being carried out as part of “MehrWertRevier”. Citizens are given the opportunity to explore issues relating to the fields of energy, nutrition and mobility together with scientists. Contact: Katharina Rzepucha-Hlubek (katharina.rzepucha-hlubek(at)verbraucherwissenschaften.de)

DigiBeSt – Possibilities and limits of digital participation tools for public participation in the site selection process (2022-2023): The project is dedicated to researching target group-specific participation options for the socially relevant search for a final repository site. The Federal Office for Safety in Nuclear Waste Disposal (BASE), which commissioned the project is obliged by the Site Selection Act (StandAG) to involve the general public in the final repository siting issue. Against the background of digitalisation and the effects of the COVID-19 pandemic, the objective of the project is therefore to explore the possibilities and limitations of digital participation tools for public participation in the site selection process. To our great pleasure, the project is being carried out in cooperation with the nexus Institute for Cooperation Management and Interdisciplinary Research from Berlin. In order to arrive at the most informative results possible, the research project includes a variety of analytical methods. These methods of analysis include a review of the current state of research on digital participation, an impact study of target-group-specific digital participation by young generations, and a transdisciplinary workshop with experts in digital participation. Contact persons: Junior Professor Dr. Tobias Escher (tobias.escher(at)uni-duesseldorf.de), Dr. Katharina Gerl (Katharina.Gerl(at)hhu.de).

“PUKI – Pflanze, Umwelt, Klima, Interaktion” (Plant, Environment, Climate, Interaction; 2024 – 2026): PUKI is a sub-project of the CRC TRR 341 “Plant Ecological Genetics” funded by the German Research Foundation (DFG). It is a citizen science project, which examines the adaptations of plants to a rapidly changing environment, taking five common plant species as examples. Together with interested citizens, PUKI aims to answer questions such as: How can plants adapt quickly enough to climate change? How do plants survive in urban environments with extreme conditions? Contact: Dr Bruno Walther (bruno.walther(at)hhu.de).

Citizens’ UNIVERSEH platform: UNIVERSEH is an alliance of seven universities from seven European countries. It was established in November 2020 to develop an innovative form of collaboration in the field of space within the framework of the new “European Universities” initiative promoted by the European Commission. Various citizen science activities also take place within the framework of UNIVERSEH: In the “Dictionary of Space Concepts”, citizens are helping create an online dictionary of space-related terms. “Code for Science” is an umbrella project encompassing a multitude of research activities with an underlying core idea: involvement of the general public in scientific endeavours by contributing to the computer coding necessary for efficient, state-of-the-art research work.