Participating in the Inserm reflection group with patients’ organizations

Interview of Vololona Rabeharisoa

Vololona Rabeharisoa is a member of the Reflection group with patient organizations (Groupe de réflexion avec les associations de malades – GRAM) of the French National Institute of Health and Medical Research (Inserm). She offers an insight into her approach to her participation to this reflection group.

The GRAM is a consultation body within the Inserm whose purpose is to reflect upon the strategic directions and actions that the Inserm could develop to promote dialog and partnership with patient organizations. Half of the group members are representatives of patient, people with disabilities and family organizations, and half are research professionals, either researchers or Inserm representatives.

How do you envisage your participation in the GRAM?

Participating in the GRAM requires commitment. When I was asked to join this group, I accepted because it seemed to me that the GRAM was an interesting place to keep current on the issues raised by patients’ associations and a research institution like the Inserm. I consider this group a place for commitment, as taking part in the group’s discussions is not a task to be undertaken if one is not somewhat convinced that the collaborations between researchers or research institutions and patient organizations are of value for actual research. One of the interests is to work alongside active and demanding associations, whose proposals, far beyond the only groups of patients they represent, concern a wide range of stakeholders involved in the health and research arenas,

The GRAM is a place where people intend to stimulate awareness and seek to encourage thinking differently about research. The current objectives are to continue transforming the relation between civil society and research, and one has to believe in it to get on with this task.

My involvement is a logical continuation of the way we work at the CSI. Elaborating around shared questionings is an approach we have followed for many years throughout the research program we have developed at the CSI on the engagement of patient organizations in research. This type of scientific engagement epitomizes our way of doing research. However, I do not envisage my participation in the GRAM in the same way as a participation in a scientific council. The GRAM is a place of activism, and contributing in this group corresponds to my wish to bring about new insight in the functioning of research. I do not participate in the group’s work as an expert. I am involved, interested in changes, sensitive to the fact that all this leads to institutional innovations.

The GRAM has recently launched a survey with the Inserm researchers about their collaborations with associations. From what perspective did the GRAM launch the CAIRNET survey?

Until now, the main work perspective of the GRAM was to show that patient organizations are capable of contributing useful knowledge for research. Partnerships and collaborations between researchers, research institutions and associations include a broad spectrum of the research field, which goes from basic research to clinical research. The contribution brought by patient associations is far from being limited to the financing of research projects. Associations provide knowledge and experience. They have the capacity to influence the organization of research work. The associative competencies and capacity were at the heart of a large part of the reflections and the proposals of the reflection group, but bearing in mind that the scientific community is little informed about the associative milieu.

Over the last two years, the GRAM has engaged in a symmetrical reflection about the research community. How do researchers view associations, the role they play in research, and their contribution? What are the experiences of collaboration between researchers and associations about? How are these experiences renewed? To answer these questions, the GRAM has decided to launch a survey among the researchers, the clinicians and the PhD students of the Inserm; the CAIRNET survey consisted in two parts: an electronic questionnaire survey and a series of qualitative interviews. By raising these questions, the objective of the GRAM is to convince the Inserm that research and the researchers benefit from joint initiatives and sustained collaborations with associations.

The preliminary findings of the CAIRNET survey were presented last January in a conference that is part of a series of conferences organized every two years by the GRAM at the Senate or at the Parliament, on issues relating to the relationships between patient organizations and research.

The pivotal message that can be drawn from these findings is the positive experience the researchers have of their collaboration with associations. This goes against many generally accepted ideas. Contrary to what one might think, the contacts between researchers and associations extend far beyond the large patient organizations and engage with numerous small associations, part of which are rare diseases organizations. More than 400 associations were cited by the 650 researchers and clinicians who answered the survey. This makes clear that collaborations are forged regardless of financial contributions. The investigation shows that a majority of the researchers consider that getting involved with a patient organization does not limit the scientific freedom of a researcher. The contributions resulting from these collaborations are quite varied. It goes from the formulation of projects, to the fact that contacts contribute to the motivation of researchers to develop projects. The findings show that the building of trusting relationships is central to these collaborations.

According to you, what is main contribution to research development brought by the studies on the collaboration between researchers and associations?

It is to demonstrate that beyond their particular interests, associations can be the mediators between the world of the decision-makers and research. The experience that associations hold today is not limited to their experience of their disease – which is essential since they speak from a knowledgeable point of view – but it also pertains to the functioning of the research and the health systems. Certain important skills that patient organizations use derives form their knowledge of problems that are not specifically theirs, in particular those who relate to the disciplinary and institutional subdivisions of research, or to the cleavage between clinical and basic research. These organizations are places where original thinking that may lead the researchers to envisage different ways of working together have developed. In my view, patient organizations are in the position to express and to relay shared concerns and get actions implemented.

The positioning of associations towards research includes a double component that the idea of mediation enables to account for. On the one hand, far from being focused on particular interests, the form of engagement of patient organizations in research is built around issues that concern all the stakeholders involved in the development of research. On the other hand, as they put common concerns relating to research to the fore, patient organizations question the conditions for the development of scientific and health policies. Patient organizations’ mediation is to be considered in the thinking going on now about the governance and the production of research and of health devices.

Photo: Inserm, E. Begouen