Navigation auf uzh.ch
Navigation auf uzh.ch
Public Engagement in Science is often equated with science communication, including transferring scientific knowledge through various media outlets or during public events for citizens. While these are valid approaches to engage a broader public with research results, the University of Zurich and ETH Zurich – through their Competence Center for Citizen Science called Citizen Science Zurich (CSZ) – have created additional opportunities for citizens’ participation, such as the active participation in research projects, opportunities for further education and networking (for both researchers and the public), and possibilities to participate at the decision-making level within CSZ.
This post forms part of a larger series of blogs that representatives of the LERU Public Engagement focus group are writing to inspire and inform academics, societal partners and citizens who have a keen interest in Public Engagement.
In this post, Olivia Höhener, Managing Director of Citizen Science Zurich, talked to Chantal Britt, a research associate at the Competence Centre for Participatory Healthcare at Bern University of Applied Sciences, Founder and President of Long Covid Switzerland, and a patient advocate. Chantal has participated in one of the projects supported by CSZ – the Long Covid Citizen Science Board – and has since then become one of CSZ’s associated members. The two of them talked about the opportunities for citizen participation in general and patient involvement in particular, the value of applied experiences and Citizen Science as a potential career path.
Olivia: Chantal, since your participation in the Citizen Science project Long Covid Citizen Science Board, you have become one of the few highly visible citizen scientists in Switzerland. What do you think needs to be in place for citizens to actively participate in and contribute to research?
Chantal: A prerequisite for Citizen Science is proactive science communication, an open dialogue between the research community and society through different formats and channels. For this, there needs to be a platform for exchange between researchers and citizens, where scientists explain their findings and answer questions from the public, and opportunities where citizens feel welcome to voice their concerns, ideas and needs.
Do you have an example for that?
A rheumatologist from the University Hospital Zurich organised an open day at a research laboratory for her patients. Physicians and researchers presented their projects, answered questions, explained their work and performed different hands-on experiments in the lab. The goal of the event was to start a dialogue, win patient partners for research projects and get feedback on symptoms and treatments from experienced chronic patients. What I really liked was that the doctors also offered the participants / attendees the opportunity to submit their questions, suggestions or research ideas in a letter box. Subsequently the doctors tried to match those requests with a researcher from their team. These activities were possible thanks to one committed doctor with an innate citizen science attitude - I wish there were more such efforts.
You yourself have embarked on an interesting career path in Citizen Science. Was this planned or more of a coincidence?
In my case, a career path in Citizen Science was not planned as such. I was, however, working in science journalism for more than 15 years at Bloomberg News and Swissinfo.ch and over 8 years in science communications and communications consulting for companies and NPOs in the fields of health, medicine and research. So, I have always had an affinity for science, and in all my jobs I already felt like a mediator between scientists and the public, trying to get the enthusiasm of the scientists across to lay people and at the same time relaying the concerns, questions and needs of the public to researchers. When I became sick with Covid19 during the pandemic, my communication and translation skills came in handy, and I felt it was my duty to mediate between patients and researchers, physicians and therapists. I directly contacted researchers via social media to ask questions on behalf of patients and to provide feedback on their research findings. This direct exchange was not only important because it allowed scientists to validate their results and us to help other patients, but it empowered us as citizen scientists. We learned that our contributions, our experiences, observations, questions and feedback were valuable and relevant for researchers. Quite naturally, partnerships developed and the Long Covid Citizen Science Board was born. So, to some extent, external constraints led us all to become part of Citizen Science.
You mention that your contribution and your experience were valued by researchers. Was any of the recognition coming from academia itself – for your applied experience, knowledge and skills? Are there any perspectives or opportunities for qualification for citizen scientists?
Being part of Citizen Science projects is still a hobby for most citizens. The main reasons being first a lack of funding for Citizen Science or participatory research projects more generally. Second, what we could call unfavourable working conditions: citizen’s charitable contributions are often unpaid, badly paid or consist of a voucher, and our qualifications and skills are often not recognised by our academic partners. Much as I would like to put everything on the Citizen Science card, the conditions are still not such that one could really consider a career as a citizen scientist in Switzerland. As for the opportunities for qualification, things are slowly changing. EUPATI Switzerland and the University of Basel organised a first Swiss training for patient experts in 2023. Lay people had the opportunity to learn how research works, and were given the necessary specialist knowledge to discuss crucial questions about a new research project together with doctors and scientists and to bring in the viewpoint of those affected.
At Citizen Science Zurich, we give teams of academic researchers and citizens the opportunity to jointly develop and implement participatory pilot projects with our Citizen Science Seed Grants. Priority is given to project applications that, in addition to the prospect of excellent research, address a societal issue and acknowledge citizens’ experiences as a specific expertise. It seems only logical that citizens are also represented in the selection committee for those grants - with an equal voice. In your opinion, what about the representation of citizens and patients in such decision-making processes?
The European Union requires patient and public involvement (PPI)1 in many of its committees and PPI is a widely established and accepted concept in the U.K. and in Scandinavian countries. In Switzerland, however, PPI is far from firmly embedded or adequately formalised. This is somewhat surprising considering it is a direct democracy. The Swiss National Science Foundation (SNSF) and Swiss Personalized Health Network (SPHN) require PPI for some of their funding calls, but Swiss institutions are so far not really embracing the concept of PPI. Commitments, requirements, guidance, structures and support to actively engage lay people in research, regulatory processes, decision-making or the development of policies remain sluggish.
Ten years ago, I was told that academia simply has no interest in the inclusion of citizens. While I observe that many researchers are motivated to include citizens as partners and co-researchers in their research projects, recognition in terms of resources and career possibilities – for both academic researchers and citizen scientists – remain sparse. If we were to formulate three recommendations to politics, academia and the public on how to push the Citizen Science agenda, what would those be?
To politics: In funding calls, include projects designed to actively involve the public through Citizen Science methodologies. Assess the quality of the collaboration in the selection process, because active participation often facilitates the implementation of policies, measures or regulations.
To academia: Make Citizen Science a prerequisite when it comes to becoming a professor Invest in adequately equipped and permanent Citizen Science advisory and coordination offices. They reduce the individual effort for each researcher and at the same time help professionalise the projects. And open up your structures and processes to citizen scientists, including enabling participation in continuing education events, issuing volunteer certificates, as well as access to libraries and paid positions.
To the public: Do not hesitate to participate in science because you think you might not know enough. Your experiences and contributions are relevant and valuable for scientists. Citizen Science is a joint learning process - and it is a lot of fun!
1 This term covers all activities that enable the active involvement of patients in the planning and execution of new research projects. The aim is to shape research with patients instead of about patients, and to let them participate as equal partners. PPI representatives can also be patient organizations, relatives, caregivers, or other interested members of the public.
About Chantal Britt: She worked on the Long Covid Citizen Science Board project funded by a Seed Grant and has been an associate member of Citizen Science Zurich since 2024. She is a research associate at the Competence Center for Participatory Healthcare at Bern University of Applied Sciences, founder and president of Long Covid Switzerland and patient advocate.
About Olivia Höhener: She is the Managing Director of Citizen Science Zurich. She studied History, English and Media Studies at the University of Basel and completed a CAS in Research Management at the University of Bern. Before joining UZH, she worked for several years in the fields of research funding, science communication, promotion of young researchers and international cooperation.
