When Inserm opens its doors to patient associations

Encouraging interaction between the world of patient associations and that of research, for the benefit of all: such was the aspiration of Dominique Donnet-Kamel in 2003, when she organised the first meeting of the Forum on Patient Associations (Groupe de Réflexion sur les Associations de Malades). Since then, the Patients’ Association Liaison Group (Groupe de réflexion avec les Associations de Malades) has come into being. A change of preposition which has no doubt contributed to improving scientific knowledge!

Dominique Donnet-Kamel

Dominique Donnet-Kamel

Researchers on one side, patients and those close to them on the other? Fortunately, biomedical research no longer works that way! Although patients need researchers in order to better understand their problems and improve their care, researchers have as great a need for patients to tell them about their illness, invest their hopes in them, and participate actively in research. Indeed, who knows an illness better than the people who experience it on a daily basis? In 2014, this seems an obvious statement. However, many years were needed to put in place the resources to allow a genuine collaboration between researchers and patient associations, disabled people and their families. One woman was also needed, Dominique Donnet-Kamel (in French), who has been in charge of the Inserm-Associations Mission since its creation ten years ago.

It all began with the launch of the General Conference on Health (États Généraux de la Santé) in 1998, and the ensuing Act concerning patient rights and the quality of the health system, in 2002. "All these debates were concerned with health, and less with research. But why not extend this dialogue between professionals and citizens to biomedical research?" she recalls. The age of health democracy had begun in the 1980s with the actions of the AIDS patient associations and even those of the French Muscular Dystrophy Association (AFM). From that time, the human and social sciences had begun to explore the challenges of cooperation between people affected by the illness, the physicians and the researchers: "Work done by researchers like Janine Barbot, Martine Bungener (in French) and Volona Rabeharisoa gave me food for thought," continues Dominique Donnet-Kamel. "Of course, there was also the example set by researchers who had not waited for us before setting up projects with the associations."

Going from "for" to "with"

© Inserm, E. Begouen

It was thus against this background, in 2003, that she made an offer to the Inserm’s Directorate General to lead a forum on how to dialogue and work with patient associations. A working group was formed, hearings were conducted and an initial report was published. Its title: "La Recherche pour et avec les Malades" (Research for and with Patients - in French). The word "with" was to change everything, leading to the organisation of an initial meeting in which over a hundred representatives of associations would participate. "The dialogue was of a high quality from the outset, and a decision was subsequently made to establish a scheme to help organise and continue it."The Groupe de Réflexion avec les Associations de Malade (GRAM; Patients’ Association Liaison Group) came into being, with Ketty Schwartz (in French) at its head. Martine Bungener would succeed her in 2008. This body draws up proposals on the strategic orientations and actions that need to be implemented to develop partnerships between Inserm and the associations. Made up of members of associations, researchers and representatives from Inserm’s administration, it is directly attached to the presidency of Inserm. The Inserm-Associations Mission is its task force, and the point of contact between researchers, the Institute and the associations. This team has become stronger over time, with the arrival of two scientists, Bernadette Bréant and François Faurisson, and that of Marie-Ange Litadier-Dossou, who provides general coordination for the Mission. "Our main objective was to understand what these associations were, and what were their hopes from research," relates the head of mission. This work enabled the construction of a database bringing together information concerning nearly 400 national structures. It also enabled us to establish that these associations play a role as scientific mediators for the patients and those close to them, collect data, build networks, manage collectives of young researchers, organise knowledge communities, provide financial support and promote the participation of patients in research. In return, they hope that the researchers will take into account their experience of the illness, be receptive to their needs, and consider them as genuine partners.

Education to improve dialogue

To facilitate this interaction, the Inserm-Associations Mission immediately began to organise training in the form of the Ketty Schwartz seminars (in French). Genetic testing, autoimmunity, inflammation, biotherapy, cognitive functions, etc. - these seminars are aimed at familiarising the associations with research concepts, tools and methods, and deepening their understanding of scientific and medical issues. Each programme responds to a request or proposal from associations. "The themes addressed are deliberately cross-disciplinary, so that these meetings are also an opportunity for gatherings and interaction between associations," explains Dominique Donnet-Kamel.

© Inserm, P. Latron

"We have also heeded the request from associations to be included earlier in the process of clinical research." In response, a College of reviewers (in French) was established in 2007. Its members currently revise practically all research protocols sponsored by Inserm. They specifically ensure that the patient information notes and consent forms are clear. They may also raise a warning if restrictions or practical problems for the patients or healthy volunteers are not given sufficient consideration.

Becoming closer to researchers

Since 2009, GRAM has studied, among other things, the expectations of researchers, while maintaining the objective of encouraging their interaction with the associations. A major victory for the group is its success in developing tools for evaluating researchers. "From now on, patient associations will feature as an item in researchers’ activity reports, and Inserm’s Scientific Committees are aware of this new dimension of their work. This is an area of activity of particular interest that is opening up, since it very directly concerns the relationship between research and society," says Dominique Donnet-Kamel with satisfaction.

A survey (CAIRNET - in French) was also conducted by François Faurisson and Martine Bungener, to gain a better understanding of researchers’ perspectives on patient associations, their reasons for collaborating with them, and the result of such collaborations. Although the researchers questioned expressed rather divergent opinions, ranging from a degree of reluctance to enthusiastic commitment, they agreed on the fact that these collaborations foster the link with society. In fact, three-quarters of respondents had met associations, and over 40% of them had established collaborations with them, which were described as contributing a special motivation to the research, as well as crucial financial support.

The latest initiative is the creation of the ScienS’As network (in French): "The associations need scientific expertise to support them in their projects. Some of them have a scientific committee made up of researchers. But the latter are working actively, and do not always have enough time to decipher the current science news or monitor information. We therefore had the idea of creating a network that would put associations in contact with retired researchers interested in this approach." Nearly 70 researchers have already joined this network, and that is only the beginning!

Associations at the centre of research strategies?

© Inserm, E. Begouen - Comité d'animation de ScienSAs', (Scientifiques seniors et associations de malades). Dominique Donnet-Kamel, Françoise Moreau-Gachelin, Jeanne Etiemble, Martine Bungener, Bernadette Bréant, Annick Guimezanes, Dominique Duménil, Michel Chignard. Paris, le 9 mars 2012.

Comité d'animation de ScienSAs', (Scientifiques seniors et associations de malades). Dominique Donnet-Kamel, Françoise Moreau-Gachelin, Jeanne Etiemble, Martine Bungener, Bernadette Bréant, Annick Guimezanes, Dominique Duménil, Michel Chignard. Paris, le 9 mars 2012.

In the space of 10 years, GRAM has accomplished a lot of work, proposed actions that proved of use to research and society, and changed some perceptions that might have impeded the dialogue between those working in science and those who hope to benefit from it. In a challenging and pragmatic way, GRAM now hopes to move up a gear, especially with the help of the new national health strategy (in French). In the roadmap that prepares for its implementation at the level of the French National Alliance for Life Sciences and Health (Aviesan), it is actually stipulated that "patient associations will be systematically involved in the different levels of drawing up research programmes."

Further information on Inserm and patient associations (in French)

“Researchers Welcoming Patients”
To celebrate its 50th anniversary, Inserm is opening up its laboratories to patients, disabled people and their families: in collaboration with some sixty associations, the Institute is organising “Researchers Welcoming Patients.” Four themed one-day events -"Kidney Diseases," "Rare Diseases," "Nutrition and Metabolic Diseases," and finally, "Neurodegenerative Diseases" - are planned. Nearly 80 Inserm research units and over 180 laboratories are involved throughout France. Further information (in French).

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