“A kind of scientific knowledge production in which people from civil society participate actively and deliberately”: this definition of participatory science guides Fabian Docagne to develop science and society synergies. Fabian Docagne is director of research at France’s Institut National de la Santé et de la Recherche Médicale (INSERM), and head of the institute’s Science and Society service What does citizen participation in research mean for INSERM? Fabian Docagne: Over the past 20 years or so, INSERM has forged links with patient associations. The institute was a pioneer in France. Following a national trend, driven in particular by the 2020 “Loi de programmation de la recherche” (research national programming law), INSERM has included the implementation of participatory research in its 2025 strategic plan. From the “Charte des sciences et recherches participatives en France”, published in 2017, participatory research is “a kind of scientific knowledge production in which people from civil society participate actively and deliberately”. The aim is to promote the expertise that comes from experience and to make it complementary to academic knowledge. It means giving a voice to this experiential knowledge, owned by the people concerned in the broadest sense: patients, their families and carers, as well as healthcare professionals, paramedical and social professionals, and others. All those who are involved in healthcare, and who may have an opinion to offer. Beyond meeting legal requirements, what are INSERM’s core motivations for developing participatory research? F. D.: There is the will to have a science that is more in touch with, and responsive to, society. Firstly, participatory science contributes to a better perception of the scientific process. The Covid crisis showed that a certain segment of the population mistrusts scientists. But on the positive side, it has triggered a huge curiosity in society about what science is doing. Participatory research is a way of responding to both this mistrust and this curiosity. Secondly, it allows us to generate new questions and answers that are better adapted to society’s needs. This is linked to the production of better-quality science: methodologies are co-constructed with the people concerned, they are more adapted, and so we produce better-quality data. How is this implemented as concrete action? F. D.: As the head of the Science and Society office, I have three main priorities. The first is to create meeting opportunities for science and society: getting people from different backgrounds to talk to each other, finding a common language, and having a fruitful dialogue. To this end, we are developing communication tools and strategies to enable people to meet and exchange ideas. Especially, we organize meeting and the national and regional scales. What is the second priority? F. D.: Funding. Today, the core activity of the department I manage is to set up seed funding. In participatory research, there is a “silent” period, during which we begin to co-construct, before carrying out the research itself. To finance this co-construction, once the projects have been selected, we allocate funding of around €15,000 for a period of 12 to 18 months. How do you go about it? F. D.: We take on projects when there’s an idea, or an observation, which may come from an association, civil society, a laboratory, or an exchange between several of these stakeholders. The next step is to transform this idea into a feasible research project, that could generate data and science. Our seed funding enable the stakeholders involved to work together to formulate the scientific questions, and develop the appropriate methodology, which will respect both the requirements of scientific methodology and the realities of the people who will be doing the research. They also plan the project’s mode of governance, the distribution of roles, reporting, and everything else required to ensure that the project runs as smoothly as possible. How many projects of this type do you finance each year? F. D.: Half a dozen. What is this co-construction stage important? F. D.: It can transform parts of the research project. When scientists design a protocol for a study without leaving their laboratory, it’s not necessarily suited to gathering the observations they’re interested in. For example, a research team working on cognitive aging, in the case of normal aging, and in the case of diseases such as Alzheimer’s disease, had the idea of exploring the memory of stage actors: these professionals tend to have a good memory, or at least good strategies for learning; and they retain their learning abilities well with age. These researchers could have established a study protocol, then recruited actors as subjects, and observed their brains as they learned texts in an MRI scanner. Had they done so, they would certainly have made observations, but far removed from what they really wanted to observe. They spent over a year working with actors to develop a protocol that took account of the real conditions under which they learn their texts, which are very different from those in an MRI scanner, which makes a lot of noise and in which you have to lie still: some actors learn only by walking around the room, for instance. Beyond adapting the methodology, are there other benefits to co-construction? F. D.: Some scientific questions from civil society are completely unexpected for scientists. And bringing new questions to light is very valuable in scientific research. For example, in Lyon, a team was working with women suffering from breast cancer. During discussions, these women said they had memory problems, cognitive problems. It has been decided to explore this, and it was shown that these cognitive issues are linked to chemotherapy. It would never have emerged among breast cancer specialists. INSERM is home to the Groupe de réflexion avec les associations de malades (GRAM), a think tank that brings together researchers, patient association representatives and members of INSERM’s central services. The GRAM is a think tank that brings together researchers, patient association representatives and members of INSERM’s central services. There is also a Collège des relecteurs: since 2007, INSERM has trained around a hundred