ERN LUNG participated in a citizen science study in the field of cystic fibrosis, allowing patients to become ‘researchers’ and to work with professional scientists to investigate their diseases and their impact on daily life.

The accepted theory of knowledge generation says that clinical research has to be planned, conducted and evaluated by professional researchers, while patients are either the object of research or serve as a data source. Their expertise of living with a chronic disease has not been adequately addressed so far. When the illness influences everyday issues, the patients may not only give answers, they may help to ask the right research questions too.

A consortium of professional researchers with participants from ERN-LUNG together with the Fraunhofer Institute for Systems and Innovation Research ISI, the national cystic fibrosis (CF) patient organisation Mukoviszidose e.V. and the Ostfalia University of Applied Sciences dared to develop a grant application without having a research question to begin with. The plan was to leave the decision of the most relevant research question to the patients. To make this possible, patients had to become researchers in a citizen science project. In classical citizen science projects, professional researchers develop the research question and citizen scientists then help them by gathering lots of data at low or no cost. The patient science project described here is based on a different approach, by enabling patients to make their own research plans and manage the whole project as responsible researchers. This is why we call this Citizen Science 2.0.

The project, which is still running, is being funded by the German Ministry of Education and Research (Bundesministerium für Bildung und Forschung, BMBF). It is managed by a group of 12 citizen researchers, composed of patients and parents of children affected by CF, together with a number of professional researchers from several Institutions. The interaction between lay and professional scientists was managed by the CF team psychologist who already had a good relation with the patients before the start of the project. The project team of patient scientists was trained and empowered by the professional scientists to make their own decisions as to the design, conduct, and evaluation of the project. During the entire process, communication was at eye level with CF-specialists and other scientists, no matter whether lay or professional. ‘It was a truly surprising and valuable experience to meet the patients, who we have known for years, in a new role. Instead of the roles of ‘carer’ and ‘cared for’ we now met them as a team and this allowed both patients and care team members to recognise new facets of each other’, summarises psychologist Johanna Gardecki, MSc, who has taken on the role of linking professional researchers with patient scientists.

The research question was not so easy to pin down. The patient scientists chose to delegate the decision to a larger group of patients and in mid-2019 issued a survey to identify the typical and most important everyday problems of CF patients. The questionnaire covered daily problems in the areas of professional activity; daily tasks; mobility and travel; the social environment and leisure; and CF therapy and care. An established tool for assessing quality of life (CFQ-R) was included to get valid and comparable data on health-related quality of life. The questionnaire was completed by more than 900 people, half of them patients and half of them relatives of CF patients. ‘We are very happy about the high participation in our survey on everyday problems with CF. It shows that we raised a research topic that concerns the CF community’, emphasises Sophie Pauly, one of the citizen scientists involved in the project.

The results will be discussed during a workshop with the patient scientists and professional researchers, together with guest scientists from outside of the project. A joint publication will be prepared.

This project has shown that funding a research initiative with an open approach and few constraints can be a worthwhile endeavour. It made it possible to broaden the spectrum of possibilities and to include elements of research which might have been left out if the scope of research was narrowly defined from the beginning. The participation of CF patients in the role of citizen scientists was fundamental in obtaining new insights into important everyday problems and in identifying areas where CF patients and parents see specific needs for research and knowledge generation.

Johanna Gardecki, M.Sc., psychologist, University Hospital Frankfurt
Sophie Pauly, citizen scientist
Katja Wecke, citizen scientist