Giving citizens their place alongside researchers in the production of knowledge and innovation is the objective of participatory research. This approach, which concerns all scientific fields and subjects in extremely varied forms, promotes science that is responsive to societal issues.
« Citizen science and participatory research are types of scientific knowledge production in which stakeholders from civil society, as individuals or groups, participate with researchers in an active and deliberate manner »: this is the definition used in the Charter of citizen science and participatory research in France, signed by higher education and research institutions (including Inserm), NGOs and patient organizations, all determined to work together to accelerate progress for the benefit of everyone.
The idea that science should be steered only by decision-makers and researchers has become obsolete: while citizens need researchers in order to access new knowledge, research needs society in order to progress. And this intensification of civil society’s expertise and skills, combined with its growing mobilization in producing and co-producing knowledge and innovation, has created a veritable third sector of research.
Alongside the historical academic and industrial research players, this third sector has enabled the emergence of participatory research together with a space for dialog and joint action. Combining the expertise of scientists and citizens, it:
- enables better responses to society’s issues, thanks to science that is closely aligned with society’s expectations
- strengthens the link between science and society, giving the latter deeper insights into the scientific process and its constraints
Participatory research can be applied to all scientific fields and at all stages of the research continuum. Researchers and members of civil society can work together to build a project and carry out its successive phases:
- definition of the questions to resolve and the objectives to achieve
- definition of the resources needed to make this possible
- production and/or collection of data
- analysis of that data
- interpretation of the results
- creation of value from the results, particularly through their dissemination (including scientific publications), application, or development
The third sector will participate in some or all of the steps, depending on the project.
Clinical research protocols: contribution of the patient’s perspective
For over ten years now, Inserm has been training patient organization members in the review of clinical research protocols. These reviewers are then asked to evaluate, on a voluntary basis, the clarity of the documents relating to the clinical trials that Inserm sponsors (information leaflets and consent forms). Not only that, but the reviewers also have the possibility to make suggestions for improving the protocol, for the benefit of the participants’ treatment.
Citizen science, a key element in co-constructing knowledge
The concept of citizen science generally refers to research projects in which citizens volunteer to collect data according to a methodology defined by scientists. These data are most often analyzed and interpreted by researchers. Their conclusions are then disseminated – not only through traditional scientific channels (publications in specialized journals) but also for the attention of those having collected the data.
Initially used mainly by naturalists, this approach is becoming popular in many research fields, including health. For example, it has been used to document various aspects and impacts of the COVID-19 health crisis, via surveys posted online by researchers during the Spring 2020 lockdown.
A participatory research project often starts from needs expressed by the third sector, for example by patients or their relatives in the field of biomedical research. In order to jointly clarify the objectives to achieve, their purposes and stakes, a stage of stabilization and sharing of knowledge – that of the scientists and that of the people directly concerned by the project objective – is necessary. This requires time and resources and must be repeated at each stage of the research, which is why all participatory research is based on a strong partnership between researchers and members of civil society.
Participatory research at Inserm
Building such partnerships is a key Inserm objective, actively implemented since 2003 and the creation of the Think Tank Network with Patient Organizations (GRAM). Interactions between patient organizations and Inserm scientists have been developed both locally and nationally through multiple initiatives: visits to laboratories, training, scientific days, working groups between patient organizations and researchers, etc. All of which are opportunities to forge links and help researchers and organizations get to know each other better. Inserm is now moving on to a new stage, with the tangible implementation of conditions for the effective research co-construction by its researchers and civil society. This mission has been entrusted to the Science and Society Department.
The reinforcement of Inserm’s commitment to participatory research is now included in its Strategic Plan (Objective 10). Citizen involvement will be encouraged wherever this is meaningful: it must be possible for all partner organizations (for patients or their families, consumer organizations, citizens’ organizations) to find their place in the research conducted at Inserm and be consulted on topics particularly relating to healthcare, research ethics, public health policy, and the consideration of scientific uncertainty. Similarly, the participatory potential of Inserm’s Collective Expert Reviews (only available in French) – the Institute’s expertise, knowledge-sharing, and policy decision-making system – will be strengthened.