Inserm and Patient Organizations

Researchers on one side – patients and their relatives on the other? Fortunately, biomedical research no longer sees things this way! While patients need researchers to understand their diseases better and bring about advances in their care, researchers also need patients who are able to describe their illness, express their expectations, and actively participate in research. At Inserm, patient organizations are research partners in their own right.

Making patient organizations research partners in their own right is a priority for Inserm – as stated in its contract of objectives.

To achieve this, Inserm has implemented a dual system:

  • Think Tank Network with Patient Organizations (GRAM)

Reporting to the Directorate General, the Think Tank Network with Patient Organizations (GRAM) is a body that reflects and makes proposals on the strategic orientations and actions needed to develop a policy of partnership between Inserm and the patient organizations.
Made up of 10 patient organization representatives, five researchers, and five Inserm administration representatives, GRAM meets every quarter.

Find out more about GRAM (in French)

  • Science and Society Department

As part of the Scientific Communication and Information Department, the mission of the Science and Society Department is to promote dialog between Inserm and civil society, and particularly with organizations that provide support to patients and their families. Its role is notably to structure, coordinate and facilitate participatory research at Inserm, in interaction with the Theme-Based Institutes, Regional Offices, and GRAM, centered around the Institute’s priority research programs.

Inserm, a pioneer in involving patients in research

With the creation of GRAM in 2003, Inserm has played a pioneering role in encouraging the involvement of patient organizations in medical research. For more than 15 years, the Associations, Research & Society (MARS) network has implemented numerous measures to promote researcher-patient links and collaboration. In particular, it has organized:

  • Training (health and environment, clinical research, vaccination, cognitive function, inflammation, etc.) for the members of the organizations, so that scientists and organizations can dialog using shared language and concepts.
  • The establishment of the College of Reviewers, which is responsible for ensuring the clarity of the documents (information leaflet, consent form) given to people who are asked to participate in clinical research sponsored by Inserm.
  • Meetings with researchers, in their Inserm laboratories, to discuss topics such as allergic and inflammatory lung diseases, hearing and hearing impairments, organ transplantation...
  • Theme-based meetings and debates to discuss scientific advances with experts in rheumatic diseases or psychiatry.
  • Major national meetings between organizations, researchers, and political players (Sharing knowledge and research perspectives (2017)).
  • Community-based research projects (Alcohol Working Group).

Reinforce Inserm’s commitment to participatory research 

The research and societal environments have seen profound changes over the last two decades: the organization of biomedical research has been transformed and the patient organizations sector has professionalized. Alongside this, Internet and social networks have enabled widespread access to knowledge and encouraged the development of citizen science, open science, and health democracy. In this context, the actions conducted by Inserm for patient organizations are evolving, with renewed vision and objectives.

In 2020, the Science and Society Department took over from the Associations, Research & Society (MARS) network with the major ambition of amplifying Inserm’s commitment to participatory research in accordance with Objective 10 of the Inserm 2020–2025 Strategic Plan. As an incubator for initiatives and a support unit for the tangible implementation of collaborative research, the Science and Society Department provides assistance in designing projects. It provides tools, procedures, agreement or contractual frameworks and methodological guides.

Find out more about participatory research at Inserm

The Science and Society Department is directed by Sylvie Ledoux.