Here’s a Preview:
More info on: Neural Magazine, ISSUE #47, WINTER 2014 ISSN: 2037-108X
Here’s a Preview:
More info on: Neural Magazine, ISSUE #47, WINTER 2014 ISSN: 2037-108X
La Cura, an Open Source Cure for Cancer, will be presented at McGill University for Participatory Medicine, a conference with Patrick Dubé (Living Lab SAT/CHU Ste-Justine), Alessandro Delfanti (Media@McGill) and Salvatore Iaconesi and Oriana Persico (Art is Open Source).
Participatory Medicine is a conference with Patrick Dubé (Living Lab SAT/CHU Ste-Justine), Alessandro Delfanti (Media@McGill) and Salvatore Iaconesi and Oriana Persico (Art is Open Source).
Thursday, February 13 at 5:30 p.m.
Leacock 232, McGill University
As part of our current focus on Participatory Media, Media@McGill presents two innovative case studies in Participatory Medicine, exploring the creative ways in which networked communications are currently being used to empower patients and patient communities.
Patrick Dubé, of Umvelt Service Design, coordinates a Living Labin partnership with the Société des Arts Technologiques (SAT) and the CHU Sainte-Justine children’s hospital in Montreal. His presentation will address how digital, interactive and immersive arts practices contribute to the humanization of health care for young hospitalized patients in this “living laboratory.”
La Cura, a web-based experiment in a crowd-sourced “cure” for cancer, will be presented in the form of an exchange between Media@McGill’s Postdoctoral Fellow, Alessandro Delfanti, and Art is Open Source members Salvatore Iaconesi and Oriana Persico. Diagnosed with brain cancer in 2012, hacker and designer Salvatore Iaconesi published his personal medical data in an open format online, and invited the public to respond. The result attests to vast range of what a cure might entail in the information age (www.opensourcecureforcancer.com).
The conference is free and open to the public.
Patrick Dubé - Health Care Centres as Innovation Social Hubs: The Living Lab Experience
At the heart of unique experiences involving the mind, the heart and the body through pain, joy, birth, illness and death, health care centres are often the seat of a complex symbolism, which goes beyond the delivery of care. In a society that focuses more on the person behind the disease and on the experience behind the care, the concept of “hospitality” gradually returns to its original sense of welcoming, of dialogues, of collective sense-making through a new phenomenon: user-driven open innovation. Through several examples, mostly living labs from the international and local scene, we will illustrate how seeing health care centres as social hubs can enable new forms of technological and social innovation, not only through an actualization of the patient-partner relationship, but also through an active participation of civil society as a whole.
Salvatore Iaconesi and Oriana Persico - La Cura: an Open Source cure for Cancer
In September 2012 Artist, Engineer and Hacker Salvatore Iaconesi was diagnosed with a brain cancer.
He decided to turn his tumor into a global bio-political performance to reclaim his complexity as a human being and, in the meanwhile, to break new grounds performing a radical experiment: publish online his own medical data to crowdsource his cancer, engaging people from all over the world to find a cure and to discover what it could mean to be cured in the information age.
The narrative interweaves themes such as Open Data and privacy, to propose an analysis of the anthropological, emotional, financial, technological, spiritual, scientific, sociological, bio-political and philosophical complexities of Medicine in the digital era.
Cancer – and the cures suggested by people from all over the world – becomes a radical example of our condition as contemporary human beings, a powerful metaphor that becomes useful to define ways in which to express and share art, creativity, scientific research, experiences, stories and ubiquitous conversations in ecosystemic, holistic ways, fostering the vision of human societies which are aware that their well-being depends on the well-being of all of their members.
The story and the process show how we now have the tools – technological, methodological, relational and anthropological – to enable people to be aware, active and engaged agents of their societies.
An Open Source Cure.
Patrick Dubé After obtaining a Masters degree in Anthropology and conducting Ph.D. studies in geomatics, Patrick Dubé started a career as a research scientist in the field of health care ICT. Since 2006, he has helped organizations enhance their creative and innovation practices and methodologies. Directly involved in several open innovation initiatives with cities, SMEs, non-profit organizations and citizen communities, he currently leads the SAT/CHU Sainte-Justine Living Lab in the field of health care humanization. He also presides the Montreal Table of living labs.
Alessandro Delfanti is a postdoctoral fellow at Media@McGill, McGill University, Montreal, where he works on the role of participatory media in contemporary biomedicine and has taught an undergraduate seminar titled Online Cooperation in Daily Life. Alessandro also teaches Sociology of New Media at the University of Milan and is a member of the research group on science communication at SISSA, in Trieste. As a journalist he writes about science and digital cultures for several Italian newspapers and magazines. He is the author of Biohackers. The Politics of Open Science (London: Pluto, 2013) and of Introduzione ai Media Digitali (Bologna: Il Mulino, 2013).
Salvatore Iaconesi is an interaction designer, robotics engineer, artist, hacker. TED Fellow 2012 and Eisenhower Fellow since 2013.
He currently teaches Interaction Design and cross-media practices at the Faculty of Architecture of the “La Sapienza” University of Rome, at ISIA Design Florence, at the Rome University of Fine Arts and at the IED Design institute.
He produced videogames, artificial intelligences, expert systems dedicated to business and scientific research, entertainment systems, mobile ecosystems, interactive architectures, cross-medial publications, augmented reality systems, and experiences and applications dedicated to providing products, services and practices to human beings all over the world, enabled by technologies, networks and new metaphors of interactions, across cultures and languages.
His artworks and performances have been featured worldwide in museums, at festivals and conferences.
Salvatore actively participates to global discussions and actions on the themes of freedoms, new forms of expression and on the future scenarios of our planet from the points of view of energy, environment, multi-cultural societies, gender mutation, sustainability and innovation on both society and business, collaborating with institutions, enterprises and international research groups.
Oriana Persico holds a degree in Communication Sciences, and is an expert in participatory policies and digital inclusion. She is an artist and writer. She has worked together with national governments and the European Union towards the creation of best practices, standards and research in the areas of digital rights, social and technological innovation, Digital Business Ecosystems (DBE), practices for participation and knowledge sharing. Oriana writes critical, scientific, philosophical and poetical texts that connect to the cultural, sociological, economic and political impacts of technological innovation. She is an expert on the formal analysis of cultural and social trends, with a specific focus on social networks. She creates breakthrough communication campaigns, performances, research methodologies and strategies.
here are the slides for the presentation:
At the end of the slide, a visualization of the activity of La Cura, and of the enormous amounts of relations which have been created in the project was shown:
We wanted to focus on a few of the slides we presented yesterday, as we feel it is very important to highlight their meaning in the overall scheme of the La Cura performance.
The first concept we wish to address is the idea of Disappearance: when you become diseased with cancer, the first thing that happens is that you disappear.
You disappear as a human being, and are replaced by an encoded, simplified, medicalized version of yourself. You are literally replaced by your data. Doctors, people, nurses do not look at you, but at your medical data, at your images, the results of your exams.
This is a great loss, because, obviously, people are much more than data. They are emotions, relationships, cultures, beliefs, communities, philosophies, subjectivities, desires, expectations. This distinction has great political and social implications.
During the presentation, while highlighting the impossibility of obtaining an image of my cancer while I was in the hospital, we pointed out the radical difference which runs between the concepts of availability, accessibility and freedom (or, even, with autonomy).
They represent different levels of the way in which it is possible to determine one’s life, amidst a society, communities and within a network of relationships.
In these times, we have become prone to falling into the trap of mistaking the concepts of availability (even abundance) and accessibility with the ones of freedom and autonomy.
Of course this equivalence is obviously not valid, with the main differences lying in the domains of the imaginaries, of desire and of opportunity. We can have all the abundance in the world, but it is nothing unless we have the possibility to develop the imaginaries to construct visions about the world which we want to enact, the desire to form such imaginaries and, then, to enact the visions, and the opportunities, as subjects and members of communities and societies, to share and enact our visions.
Current times are not times of financial crisis: they are the times of the crisis of imagination, of desire and of the capacity to create shared opportunities as societies.
This scenario is closely connected with the progressive processes of encoding that are characterising our societies. Things such as relations, health, environment and social participation are progressively becoming things you buy (in the many senses according to which things can be “bought” in the digital era, as social networks have shown), rather than things you do as a society.
The entire project and global performance of La Cura is, possibly, all dedicated to breaking the code of this approach. In La Cura the medical data serves as a metaphor for this precise objective: reclaiming humanity going beyond its encoding through data. In La Cura, data is reappropriated and transformed into desire, through a global, shared performance.
In this way, we have tried to describe the emergence of a peer-2-peer welfare model, in which entire communities (potentially global) participate in a sense or reciprocity, of mutual support: the sense of a society whose well-being depends on the well-being and freedoms of all of its members.
This concept allows to research on the possibilities to enact practices in which the money and financial based economy to which we are used to is transferred into another domain, to a different set of economical systems. A transfer from one economy to a multiplicity of other ones, based on emotions, desires, emergent voices and perspectives.
In these kinds of transfer we see many of the possibilities which will fuel our opportunities in the near future.
The panel will be part of the Hashes to Ashes section of the Festival, curated by Tatiana Bazzichelli. It will be moderated by Alessandro Delfanti, and will feature the participation of Salvatore Iaconesi, Pinar Yoldas and Rüdiger Trojok.
During the conversation we will narrate the story of La Cura.
We will highlight the progressive encoding processes of human life that are taking place in the contemporary world, reducing human beings to data and simplified, encoded version of themselves, starting from the growing medicalisation of our societies, and proceeding all the way up to the visions of the Quantified Self and the horizons of BigData, and the impacts they have on our daily lives and on the possibility to express our complexity, preserve our privacy, and more.
Through the scenario of La Cura, we will present the opportunity to break the encoding, reclaim our data and complexity, and bring both back into society: the “patient” becomes a human being, once more.
The result is a p2p oriented transformation. Health moves away from being a service, from being something you buy, and has the opportunity to become something you do, together, as part of a society, of communities, of cultures and of their intersections, exchanges, communication.
We will describe the results, under the forms of new modalities for peer-to-peer welfare, different economies, fuelled by desire and bodies. Replicable, scalable results, across domains and communities.
You can find the article here: Portraits – Salvatore Iaconesi “Mon Cancer en Open Source”
and kudos go to Agata Marszałek for the beautiful illustrations!