Civil society and science: the parallel between patients association and social entrepreneurs

 

In France, a very well-known association is the AFM Téléthon. This patient’s association is known through the Telethon, a 30 hours TV show on public channels. It is a fund-raising event that takes place the first week-end of December every year and gathers together millions of participants.

What is particularly striking about this association is that before its creation patients with neuromuscular diseases were abandoned by doctors who were seeing those pathologies as hopeless. Though, this patient’s association managed to find the intellectual and financial means to fight those diseases and to improve quality healthcare and patients’ autonomy. Nowadays, the AFM fights up to 200 neuromuscular diseases by supporting the development of innovative therapies for rare diseases: a kind of action that used to be limited to the French government. Taking the responsibility of a problem that is thought to be normally addressed by the government is usually done in the field of social entrepreneurship. This parallel is not irrelevant: you’ll see throughout this article how social entrepreneurs can modify research actions the same way this patient’s association did.

Nowadays AFM Téléthon is not an isolated case anymore: several associations are working with researchers as the core of their mission. I attended a session on that matter during the “Sciences Sociétés” (science and society) forum held in Paris on the 7th of January. From that session I gathered two major points on which patient’s association and social entrepreneurs are alike.

1) There are some experts outside, let’s acknowledge it

Experts are not always those in the lab. Alain Calles, national delegate of “Vie Libre” insists on a major point: recognizing patients as experts of the field. Every patient has knowledge of its own body and of the illness that is precious to researchers. This acknowledgment of a “truth” outside of the laboratory is crucial, and only by valuing this input will researchers get a better grasp on the illness.


Dr Fatimata Sy, of Enda Santé, draws the same conclusion in another field. The scientific staff of Enda Santé collaborates with local population to find new active molecules in endemic plants. Most of the time, these plants are used by local communities in traditional medicines. Thus, the community expertise and knowledge, ancient or not, is being mobilized to help and accelerate modern research. Without this local understanding of the ecosystem, these collaborations with local communities and these participative researches, there would be no way for scientists to have access to this precious information.


These examples show us how important it is to acknowledge the existing expertise of those who are on the field. The same perspective can be taken when working with social entrepreneurs: they are the ones with a perfect understanding of their communities, their challenges, and how to better answer them through research. Collaborations, such as those we create at SoScience, between researchers and social entrepreneurs are a wise way to take into account these inputs from the field.

2) When there is room for dialogue, there is room for innovation

Most of the time, these inputs are a great source of innovation. Dr Lucie Hertz Pannier, vice-president of La Fondation Motrice, explained that no-one was interested in Cerebral Palsy before she created her foundation. The foundation worked on driving interest to the field for years. Today, young doctors can enter this field and gather the necessary means (both financial and human) to achieve success. With this renewed scientific force, a new path for innovation is possible and major progress can be achieved in the field leading to concrete improvement in the lives of people with CP. This new interest of the scientific world in the Cerebral Palsy is absolutely necessary in order to foster innovation and scientific knowledge. It could not have happened if it was not for the involvement of parents of patients 10 years ago from now.


It would be a mistake to believe that we can afford not to answer some issues because our attention is too focused on other priorities right now. Governments decide for major orientation of research, but when they forget (well, too often) to tackle important issues civil society can lead the way. This attitude not only answers a social problem, but also helps fostering innovation. Indeed, as can be seen with many participative researches with social entrepreneurs, social constraints are a major source of innovative thinking for researchers. We cannot afford to miss out on innovation opportunities.

We can see that the role that played major patient’s associations in research can be endorsed by other actors of civil society, such as for example social entrepreneurs. Actually, even the challenges that we encounter today in these approaches are quite similar: particularly the need to create a common language between every stakeholder (scientists, civil society, investors …) is crucial. At SoScience we deal with this challenge thanks to our team of scientists that are also social entrepreneurs themselves and that can understand both parts.

 
Nathan Grass