Health research projects involve patients, carers, carers or other members of society. However, when it comes to participatory research, the role of these citizens goes beyond the mere role of study participants and enters into a true partnership with the researchers. Close connections that Inserm has been promoting and supporting for a long time thanks to the Science and Society department led by Fabian Docagne.
An article in the Inserm activity report 2022
What is participatory research?
Fabian Docagne : It is a form of knowledge production that requires the active participation of the people concerned. In practice, it is a science that seeks to take into account the experiences of affected people – patients, carers, etc. – in order to create knowledge that complements academic knowledge.
In which areas is participatory research carried out?
FD : Rare disease projects and certain areas of social science research conducted at Inserm are permeated by this practice. However, these are rather specific areas. Elsewhere, participatory research is undoubtedly less common at Inserm. One of our important tasks is therefore to sensitize all scientists to this form of research and to explain to them what advantages they can derive from it. Of course, this is not a request to do so, but simply a reminder of this possibility when it is relevant.
What measures have you taken in this regard?
FD : We need to create meetings between researchers and groups and create the conditions for fruitful dialogue between them. For this purpose, the Science and Society Department organized a special day to which it invited groups and researchers from Inserm. I say “collective” because the event affects not only clubs, but also professional communities or groups of a certain age group. I also use my “pilgrim’s staff” to contact researchers to raise their awareness of participatory research.
If the researchers are not aware of such projects, there must also be deficits on the part of the experts. Could insufficient support for participatory research discourage scientists?
FD : We are working with the Inserm Evaluation department on this topic. Within the institute, we would like to sensitize the scientific committees so that reviewers take participatory research into account as best as possible in their deliberations. And outside of Inserm we are trying to create indicators that allow us to evaluate the benefits of our actions, the benefits of participatory research.
What other leverage do you have to encourage researchers to pursue this path?
FD : We offer them adapted support and financing. Things often have to happen quickly when good ideas come to the table and people are sitting at the table. We intervene as soon as the researchers and the collective have decided on a research idea. There we support the scientists in turning the idea into a solid project: we agree on the scientific question, the appropriate methodology, the type of governance and the requirements for good practices. Everything that means that the project can be submitted to a national or European tender. This support takes into account the “quiet period”, often several months, during which the parties agree on a common language, for example. This phase of work allows us to lay the foundations for a solid project.
Are there resources for these first steps?
FD : Yes ! After consultation between the Science and Society Department, the management of Inserm and the think tank with patient associations, start-up financing was launched in 2022. These are not huge sums, between 10,000 and 20,000 euros, but they can be used to cover transport costs for missions, for training (researchers or collectives), for the employment of mediation specialists… Of course, we do not issue blank checks. We discuss the justification of the costs in advance with the project managers. And we have a selection and advisory committee for this funding. We support carriers for a year at best, but in the end we support a fairly short period of time.
What does support look like after launch?
FD : Our help goes far beyond money. We provide project leaders with the experience of researchers who have already conducted participatory research. When obstacles arise, it is not uncommon for other scientists to have encountered the same obstacles. We are also in the process of establishing a network of these researchers at the national level. We also support project managers by contacting Inserm’s central services with regulatory, financial and communication issues.
Which projects were started in 2022?
FD : There are three. First, there is no identified collective regarding the mental health of adolescents and young adults. One of the challenges is therefore to jointly define the instruments that make it possible to address this population group in the best possible way. The idea is to derive from their experiences what constitutes their well-being. This leads to symptoms that were not previously recognized. When we prejudge what good mental health is, we can be wrong. The second project focuses on post-traumatic stress and its effects on the sleep of women in prostitution. The researchers are collaborating with an association of social workers and caregivers who work with these populations. Finally, the third project concerns DiGeorge syndrome due to a genetic deletion. It is not known to have any effects on the brain. However, in practice we observe that a significant proportion of young adults with this mutation experience psychiatric symptoms. The idea, therefore, is to work with affected patients to try to determine the natural course of the disease in the hope of highlighting warning signs of this transition to psychiatric symptoms. And that is to treat them as quickly as possible. Participatory research is useful here too, as we cannot predict these warning signs. We really need to work with patients to achieve this.
Fabian Docagne is responsible for the Science and Society department. This structure helps teams Insert to start their participatory research projects and contributes to the promotion of this research modality within the institute committees. Also read: Towards good participatory research practices
Cross-reference to two participatory research projects
What are your participatory research projects?
Julie Haesebaert : Our work aims to improve the organization and performance of care along two main axes. One of them concerns the performance of health professionals, their practices and their working conditions. The second aspect, which deals with the relationship between patients and healthcare professionals and their treatment journey, is particularly suitable for participatory approaches.
Benedicte Terrier : We have been conducting neuroscientific research on student attention in the classroom for almost ten years. In 2022, with very dedicated teachers, we developed exercises to assess attention in the classroom, which are integrated into the actual lessons. We also fully discussed with them the attention education program used in middle and high school.
What were the triggers for these participatory approaches?
BT : In 2014, Jean-Philippe Lachaux, a researcher at the Neuroscience Research Center in Lyon, tested instruments to measure attention in class. The teaching teams then asked him to help them improve this skill in their students: Atole (Attention in School) was born. This pioneering project began even before the term “participatory” appeared at Inserm!
JH : For our part, we have worked to improve the care of stroke victims, from the onset to the chronic phase, which is characterized by returning home and living with the aftermath. We quickly realized that patients and the population need to be closely involved in this process, especially in the acute phase when the stroke occurs: it is important to contact the healthcare system as quickly as possible! We therefore contacted a patient association, France AVC 69, to build a project together to help detect the onset of a stroke and raise awareness among the population. Since then there has been a new club, Arrpacwas created involving patients, clinicians and researchers on our team.
How can this type of research be more difficult than a traditional project?
JH : In general, a participatory research project is longer, there are more phases. One could even say that it includes several projects: on the one hand, the involvement of those affected and, on the other hand, the research project itself, which is to be carried out in parallel.
BT : The Atole project also raises the question of “scaling”: educating our attention is a social matter. It is therefore crucial that the tools resulting from this participatory approach are disseminated both in the educational world and among the general public. To do this, it is necessary to maintain your own website and manage the resulting communities of teachers and researchers. We do this today in our working hours as researchers, but we are looking for relay partners, motivated and volunteer employees… They are essential to improving this connection between research and society in the long term.
Find more testimonials from researchers conducting participatory research on Inserm Pro.
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