The decentralized social networking systems towards mobilizing actions of citizenship and solidarity against cancer

The goal of the present study is mapping the nature of possible contributions of participatory online platforms in citizen actions that may contribute in the fight against cancer and its associated consequences. These platforms are usually associated with entertainment: in that sense, we intent to test their validity in other domains such as health, as well as contribute to an expanded perception of their potential by their users. The research is based on the analysis of online solidarity networks, namely the ones residing on Facebook, Orkut and the blogosphere, that citizens have been gradually resorting to. The research is also based on the development of newer and more efficient solutions that provide the individual (directly or indirectly affected by issues of oncology) with the means to overcome feelings of impotence and fatality. In this article, we aim at summarizing the processes of usage of these decentralized, freer participatory platforms by citizens and institutions, while attempting to unravel existing hype and stigma; we also provide a first survey of the importance and the role of institutions in this kind of endeavor; lastly, we present a prototype, developed in the context of the present study, that is specifically dedicated to addressing oncology through social media. This prototype is already available online at www.talkingaboutcancer.org, however, still under development and testing. The main objective of this platform is to allow every citizen to freely build their network of contacts and information, according to their own individual and/ or collective needs and desires.