La Cura at Participatory Medicine in Montreal

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).

More info on McGill’s website: Media@McGill presents Participatory Medicine

Date:

Thursday, February 13, 2014 - 17:30 to 19:00

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.

Presentations

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.

Biographies

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.

La Cura, after the presentation at Transmediale 2014: Afterglow

So, we gave a presentation about La Cura at yesterday’s panel at Transmediale 2014 Festival: Afterglow:

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.

La Cura on Usbek & Rica

La Cura on Usbek & Rica

La Cura on Usbek & Rica

La Cura, the Open Source Cure for Cancer, has recently been featured on the Usbek & Rica Magazine.

You can find the article here: Portraits – Salvatore Iaconesi “Mon Cancer en Open Source”

and kudos go to Agata Marszałek for the beautiful illustrations!

Salvatore Iaconesi on Usbek & Rica

Salvatore Iaconesi on Usbek & Rica

 

Openness and Near Future Design at I-Lab at Luiss University

We will be at I-Lab at Luiss University for a workshop on Near Future Design and the concept of Openness, on November 14th 2013, from 2pm to 6pm.

Here is the EventBrite page for the workshop and here is the Facebook page for I-Lab Luiss, where you can know more.

In the workshop we will explore, from the point of view of our experience across arts, design, architecture and business, the idea of Openness, Collaboration and Participation, as a driver for many of the things we do in our contemporary world.

We will approach the subject from the point of view of Near Future Design.

To understand the mutation is essential to direct it, and to be able to confront with the emergency and with the effective risk of catastrophe (environmental, economical, political) which «the normal flow of things» certainly does not allow us to avoid. It is essential to study and to forecast the future in order to confront with all of these issues. At the condition by which all of this work (as in all the other areas of the sciences) does not produce a caste of super-technicians who claim the right to decide – alone of together with the bureaucracies which govern us – everyone’s destiny. There must be no doubt about this: the people have the right to decide their own destiny.

Antonio Caronia

From this quote by Antonio Caronia, it is clear how the possibility and opportunity to collaborate to design our own future is an essential part of our freedom. To do this – to enable this opportunity – we adopt a series of methodologies which enable to transform the future into a performance: a dynamic condition whose aim is to help us become active (performers) in trying to give answers to the question “What future do we really want?”.

This is a previous article about Near Future Design which we wrote a few days ago. David Gray and Jon Husband helped us a lot to rewrite it, to convey both the message and the methodology in more direct and accessible ways. You can find this new version article below, and we thank them for being so helpful, and for bringing a whole new level of accessibility to the things we talk about.

See you at the workshop! (or if you can’t make it: see you here on Art is Open Source for the updates!)

Near Future Design: the role of design in creating the future

There are many possible futures. Perhaps the most important question we can ask ourselves is:

What future do we want?

The future does not exist. We live our lives in the present, and the future exists only in our imaginations, in our hopes, dreams, wishes, plans, forecasts and blueprints.

“The future,” in other words, is something we experience today. It is a performance, a global conversation about what we want, what we fear, what we expect, and what kinds of possibilities we can imagine.

We establish the future by the conversations we have about it.

Innovation.

Innovation is the art and science of bringing valuable new possibilities into being. That is, futures that are both desirable and possible. Thus, innovation is both design and implementation: designing a possible future and then making it happen.

But which future do we want?

Near future design.

The near future designer serves to activate the imagination; to help communities “conceive possibilities which do not yet exist” — possible futures — using dialogue, visualization, modeling and performance.

One of the central assumptions of near future design is that the future is not singular. There are an infinite number of possible futures, and we bring futures into being first by imagining them, next by exploring and examining them, and finally by selecting them.

The near future designer helps society and communities imagine, explore and examine possible futures, in order to increase the “possibility space” and improve the quality of decisions we make about what we value and how we want to proceed.

The near future designer helps us decide: Which future do we want?

The conversations we have, and the explorations we make in the present are important because they change the ideas that we have, and the decisions we make. Thus in a very real way, they change the future, because altering the present in such a way that we can make better choices and bring better futures into being.

The near future designer situates possible futures into the present, so we can explore them, think about them, talk about them and make value judgments about them.

To do this, we must understand the state of the arts and existing technologies. But that in itself is not enough. We must also understand the limits of our imaginations, the rituals and tensions of our times, including our deepest conflicts as well as those things which inspire us and provoke a sense of wonder.

We must create a tangible “sense of the possible” that feels real.

The near future designer presents us with tangible possible futures in the form of objects, visualizations and performances, to give us a more visceral understanding of what those futures mean, how we might experience them, how they might feel. By creating a space where we can suspend disbelief and simply experience the possible, the near future designer helps us develop a sense of the possible by giving us things to play with and ways to act it out.

This is Near Future Design.

A performance exploring possible futures, in which the observed current state of the arts and technologies mingles with culture to create a collective “sense of the possible”.

In which we improve our ability to explore, examine and experience possible futures, in order to make better decisions about which futures we want.

In which we connect and synthesize multiple sources of knowledge, in all disciplines and modalities, across cities, cultures, and virtual domains.

In which we can better understand tensions, conflicts, harmonies, dissonances; rituals, and tendencies when they are in their early stages, when they are still only suggestions.

The near future designer plays a fundamental role for society, creating spaces where people can perceive possible futures and take an active role in a conversation to build, create and perform their “collective possible,” helping more people make better decisions about the future we want.

Process

We have developed a formal process for Near-Future Design.

  • Define the areas of interest  for a topic

    • during each cycle/project we define the topics and areas of interest in each topic.  Those topics and areas  form our research domain;

    • these can be contiguous, complementary or contextual, providing continuity but also the possibility to expand to observations about indirect influences on the transformation of human societies identified by the research;

    • the output of this stage is a visual representation of the research domain, along with rigorous documentation;

  • The Future World Map

    • the map aims to collect information about what is perceived as “possible”, “impossible”, “desired”, “feasible”, “preferred” and “envisioned”;

    • it has two main areas, regarding the state of the arts and technologies, and the anthropological, ethnographic, psychological and emotional analysis of relevant cultures, communities, groups, organisations and individuals;

    • the part of the map that takes into account the state of the arts and technologies mainly deals with technical issues concerning the evolution of technologies, the data and information about the relevant contexts, and a description of trends;

    • the part of the map that takes into account the anthropological, ethnographic, psychological and emotional analysis deals with collecting and curating evidence about the ways human societies shape themselves (in the given contexts), and describes approaches, strategies, tactics, rituals, relationships, networks, emotional expressions, gestures, economies, dynamics, ecosystems and their relative equilibria, both current state and in transformation;

    • in all sections, information is provided about background, the socio-technical settings, the possible actors and stakeholders, and an expanded context for the stories that are about to be told;

    • the output of this stage is a visual map, a report and an extensive knowledge base.  This output can assume different forms, depending on the context and circumstances;

  • The Story Setup

    • it is the instantiation or launching of the story;

    • it describes in general terms the future scenarios which we aim to describe, at the same time limiting the scope by excluding certain areas which will not be examined, and by opening up the domains which will be the focus of the research;

    • its output is under the form of a narrative, expressed in visual and textual terms;

  • The Concept(s)

    • each possible future is examined by describing it conceptually (often abstract or diagrammatic sketches) as well as with a draft narrative which highlights the main modalities and sets up the development of the story;

  • The Story Functions

    • each story is designed according to a formalised schema (usually the three-acts of Setup, Conflict and Resolution), to provide consistent, solid narratives;

    • for each story, the basic story functions are created, highlighting the core theme of each narrative, which describe in growing detail the “stories of the chosen future”;

    • multiple stories can be created for each concept, even following different paths among the identified possibilities;

    • the output of this stage consists of the list of central events for each story, as well as a diagrammatic representation of their relations and those carried by the different (and alternative) storylines being developed;

  • The Event Maps

    • each story is expanded into an Event Map;

    • each Event Map is a diagram in which the main parts of the stories are grouped into circles, starting from the core (the main phases of each story) as well as some additional events which might be added to balance the story logic;

    • satellite events, alternative paths and time-based items are added to the Map to create context, and to enhance the world-building characteristics of this stage;

    • each story described in this way constitutes a world, giving a full sense of context and of credibility;

    • the output of this stage is constituted by the Event Maps diagrams and by the pertinent documentation;

  • The Story Maps

    • the Event Maps are transformed into sketches;

    • the representation in sketch form increases granularity and makes each Event more concrete;

    • this phase allows for some iteration with the previous ones, as its concreteness gives immediate evidence about the balance of the stories and about the necessity to re-factor them at one of the previous stages;

    • the output of this stage consists of the sketches and the pertinent documentation;

  • The Design Fictions

    • Simulacra

      • the objective of this phase is to create a simulacrum, a credible, possibly functional, “prototype from the near future” (a pre-totype), through product design and communication design, working across different media;

      • the objective is “world building”, creating not only “the object” (or service, or idea, or …) but also to create the world around it, for its credibility;

      • we answer the questions “What would be the world like, if there was object X? What would be in it? How would people behave?”, and we try to implement as much as we can about the answer using different media;

      • the final result should create a state of “suspended (dis)belief” in which it is impossible (or at least somewhat difficult) to decide if the “object” is real or fake, as there are multiple clues and evidences that point to its existence;

      • the simulacrum (and its state of suspended dis-belief) is the tool which we use to “shift the perception of the possible”, and to start the global dialogue around the possibilities for transforming human societies, thus triggering the performative dimension of Near Future Design;

    • Transmedia Narratives

      • the output of the Design Fiction phase, thus, is a set of Transmedia Narratives implementing the simulacrum for the story;

      • the Transmedia Narrative is a multi-modal storytelling technique which is able to move and combine the effects of multiple media, from physical objects, to websites, urban interventions and more.

 

UPDATE: These below are the slides from the workshop:

The Mirror and The Source @ Penny W. Stamps Speaker Series

 

AOS in Detroit

AOS in Detroit

AOS will be in Ann Arbor (Detroit) on October 17, 2013, for the Penny W. Stamps Speaker Series at the Michigan Theater with “The Mirror and the Source“, a talk/performance exploring the transformation of human beings, and the new rituals, emotions, new intimacies and public spaces of our augmented lives in the digital era.

“The Mirror and the Source” will be an exploration of contemporary life with Art is Open Source, an international network of artists, researchers, technologists, architects, designers and activists interweaving disciplines and practices to understand the current mutation of human societies through the wide availability and accessibility of ubiquitous technologies.

A visual, sonic journey through the new rituals and emergent ways in which we have radically changed the ways in which we work, relate, consume, feel emotions, have sex and entertain ourselves.

The first Open Source Cure for Cancer, the real-time digital life of cities, the story of a baby artificial intelligence called Angel_F going to the United Nations to defend its digital rights, a very dangerous videogame, human tamagotchis and a fictional company using a very naughty business model will be among the many performances, artworks and researches which we will encounter along the journey.

Come and meet us here:

Art is Open Source and the Penny W. Stamps Speaker Series
“The Mirror and the Source”
Thursday October 17th 2013
at 5:10pm at the historic Michigan Theater
603 E. Liberty Street in downtown Ann Arbor,
(free of charge and open to the public)

more info:

http://art-design.umich.edu/stamps/detail/art_is_open_source

http://www.michtheater.org/shows/art-is-open-source/