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 Communication 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. Interactions between associations and Inserm scientists have been developed, both locally and nationally, through a variety of initiatives: laboratory visits, training courses, scientific conferences, working groups between patient associations and researchers, creation of the College of Reviewers, etc. These are all opportunities to forge links and help researchers and associations get to know each other better.

Reinforce Inserm’s commitment to participatory research 

The research and societal environments have seen profound changes over the last two decades. Alongside this, the internet and social media have enabled widespread access to knowledge and fostered the rise of citizen science, open science, and health democracy. In this context, in 2020, Inserm decided to take a new step forward by working to establish conditions conducive to “participatory research,” i.e., the joint development of research projects by its researchers and civil society.

This mission was entrusted to the Science and Society department. As an incubator for initiatives and a support unit for the practical implementation of collaborative research, this team provides assistance in project design. 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 Fabian Docagne.