“Europe of, by and for patients” The role of European patients’ organizations - by Professor Vololona Rabeharisoa, Centre de sociologie de l’innovation, MINES ParisTech & EPOKS Partners
“Today, patient groups matter more than ever. Their numbers have increased, they are more professional, and they have a louder voice in the healthcare debate, even sitting on regulatory bodies such as the European Medicines Agency.”
Prof Rabeharisoa talked about how patients’ organizations turn their diseases into matters of concern for Europe. She described how three patients’ organizations transformed their condition into issues for the European Union using three different modes of acting:
1. Scaling up political advocacy.
Moving to a European level of organizing and acting, with the expectation of a boomerang effect at national level.
2. Politics of numbers or gaining statistical power
For example, EURORDIS was formed with the idea that if people with rare disease come together then the issue of rare disease becomes even more legitimate at European level than at national level.
3. Politics of experience
Gathering the experience of different people in different countries and showing that there is a common sense of experiences in order to engage Europe to consider the disease as a serious matter for European people.
“European Patient Organizations (EPOs) have a two-faceted role to bring a disease at a European level. First, to make patients a European subjects though defining the strategy of doing and acting at European level. And second, to make their disease a European problem and to prevent the fact that the condition you are consent with is something that deserves interest from European institutions.”
EPO’s added value is that they introduce evidence and promote what comes after that evidence. Once there is evidence and a comparison of countries, there will be engagement on a political level. This is considered to be a side effect. Based on the evidence some countries may appear advanced whereas other may appear backward”