Salvatore Iaconesi: Open-sourcing a cure for his cancer

Posted on Monday, February 10, 2014
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“When you have cancer you disappear. And you are replaced by someone/something else: a patient,” says Salvatore Iaconesi,

By Alessandro Delfanti

Salvatore Iaconesi is an artist, interaction designer and hacker. He is the founder of the international network Art is Open Source, which works on the transformations brought about by ubiquitous digital technologies and networks. In 2012 he was a TED Fellow and is Eisenhower Fellow since 2013. With Oriana Persico, he teaches Interaction Design, Digital Design and Transmedia Narratives at La Sapienza University of Rome, ISIA Design Florence, Rome University of Fine Arts and IED Design institute.

In 2012, Iaconesi was diagnosed with brain cancer. He decided to hack and then publish his own medical data online and thus 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. Through the website La Cura (The Cure), to this day he has received close to 900,000 messages from about 200,000 people.

Along with Alessandro Delfanti (Media@McGill Postdoctoral Fellow) and Patrick Dubé (SAT/CHU Sainte-Justine Living Lab), Iaconesi and Persico will be participating in Media@McGill’s panel on “Participatory Medicine,” Thursday, Feb. 13, at 5:30 p.m. in Leacock 232 (855 Sherbrooke Street West). The conference is free and open to the public. For more information, go here. The following is an interview Iaconesi did for the McGill Reporter.

In La Cura, you set up an online platform to share all your personal medical data and asked people to give you a cure in form of artwork, advice, support… Why did you decide to be completely transparent about your condition and what were the main results?

When you have cancer you disappear. And you are replaced by someone/something else: a patient.

This is a strange being, entirely made of data: blood exams, images of your body, lab values, diagnoses and more. But this data is not you, it is not as complex as yourself. You are suspended from the world around you, and become encoded through a set of data. Nothing really speaks to you anymore, but rather, about you.

One day, when I was in the hospital, I asked for an image of my cancer. Because I wanted to look at it, to see this thing that was growing inside me. Well, I was not able to get it. Everything got in the way: the medical system was not designed for me to have an image of my own cancer. I had the distinct feeling that this thing was not about me, but about a medicalized version of me, with reduced complexity. It didn’t feel right at all, also with cancer being possibly the most “ecosystemic” of diseases, having to do with our environment, the things we eat, our daily rhythms, our stress levels, our social environment, and so on.

So I left the hospital, and I asked for my medical records and images in digital format. I really wanted that image of my cancer. When I arrived home I had a surprise: the files were in a format that is not meant to be used by “ordinary people”. You need specific software to open it, and have to install special libraries. Even if you are eventually able to open it, it is not really meant for you to use: the language, terminology and iconology is completely out of your reach. Again: the images of my cancer were not meant for me to access and use. They were made for technicians and doctors. Again: the “patient” came out, the encoded, simplified, medicalized version of myself, preventing me from accessing my own information, and to bring it with me into my complex world, sociality, and feelings.

So I decided to convert the files into more ordinary formats (jpegs, docs, html). I reclaimed my information by bringing it back into my world. I ended my life as a patient, and proceeded to become a human being again. I put the data online and started La Cura.

In La Cura I asked everyone to join me in my disease and turn it into a matter of engagement for society as a whole, in a vision according to which society’s well-being (health included) depends on the well-being of all of its members, including the relations, processes, and responsibilities that derive from this. How can a person participate in my cure? How about an artist? A designer? An architect? An academic? A hacker? And so on, obviously including doctors and researchers.

Your initiative urges us to rethink the meaning of the words “cure” and “patient.” What is the value you attach to different kinds of cures and how did the website help you tackle your condition? How did this experience change your position within the health system?

People were sharing stories, artworks, medical advice, consultancies, magic, spirituality, eating suggestions. And support of multiple kinds, from emotional, to financial, and everything in between. People visited, participated in multiple ways. People went to their own doctors to get information about my cancer to share it with me. Most important of all, people immediately recognised me as a human being again, not a patient. This was particularly evident with doctors and researchers. They immediately stopped considering me as Patient X, and engaged with me at different levels, using new languages: they were finally talking with me, rather than about me.

It was a process of a global co-creation of a cure that interwove drugs, therapies, emotions, social issues, financial issues, knowledge and cultures of multiple kinds. And it was totally emergent, spontaneous and autonomous (and even dissonant and conflicting, sometimes). For me it was a new form of P2P Welfare. It was not about pity, or suffering. It was about all of society taking an active part in the well-being of fellow human beings. It was amazing: everyone had something to do, collaborations started happening, even spin-offs of people doing it on their own, or starting similar projects. Companies started asking for advice to develop new services in this direction. People started to form their own processes to deal with all this information and knowledge in collaborative ways (about 200 people, for example, were engaged in classifying more than 400,000 messages which arrived: they developed software and processes to do this).

Soon enough, it was not about suggesting possible cures or treatments, it was about enacting (performing) a radical transformation of what it means to be diseased and to cure someone: bringing it both away from medicalization and back into a loving, caring society using a P2P welfare model which included everyone, from people, to institutions, to organisations and companies.

It seems that none of the individual cures you received is important or useful per se, but rather that the Cure itself, and I mean the platform and the response it generated, represents your cure. Is that true? And what are your favourite individual cures?

If you think about it, in the end it is not really about me. What would you do with one person’s advice about what shoes to wear? How about 10 different people’s advice? How about 1000? Or one million different pieces of advice? What shoes do you wear in the end? This was never about obtaining advice on how to cure cancer. Also because, luckily, doctors are not stupid at all. Or bad guys. If there is some batty remedy that really works to cure cancer, be assured that they would know about it, and that you would, too, with relative ease.

Of course we worked with all the data and information, transforming it into accessible, usable knowledge. For example we are working to analyse people’s perception about the possible cures for cancer: what are perceived to be the safest, most expensive, riskiest, more desirable, in which cultures and locations across the world, and so on. And that’s only one. We have developed lists of researchers for the different approaches, of traditional and natural treatment options, of magicians and esoterics. We collected stories of different kinds, experiences, and more. But the most important, precious, thing that happened was to materialize the perception of the possibility for an alternative world, in which, as I said, health and well-being are not services which you purchase, they are something you “do,” together with the whole of society. And disease is not a condition in which people are thrown out of society. Franco Basaglia (an Italian psychiatrist who in the 60s and 70s played a crucial role in the reformation of the Italian mental health system) was a great inspiration for this.

As for my favourite individual cures: a dear friend whom I hadn’t heard from in a while suggested taking a trip to Argentina, to relax, eat natural food and breathe clean air. A person suggested in a beautiful, poetic way that I should meet the incredible surgeon who eventually performed surgery on me. And a person commenting on the initial video on La Cura suggested that I could kill myself, instead of curing my cancer, and give a supposedly enormous amount of insurance money to my friends and relatives, so that they could live a happy life. This one, obviously, as a reminder of the richness of points of view which have been provided in the process, and the possibilities and risks that come with them.

Do you think sharing and building communities of care through the internet is something we are more and more required to do as patients? Is sharing a way to reappropriate our health or a new form of medicalization?

I think that separating the two elements makes little to no sense. I would like to answer this with a quote by Franco Basaglia: “It is in silence that he feels owned, lost in his body, alienated, restricted in his time structure, deprived of any intentional awareness. He does not have any distance: distance from him and the other’s gaze; he is an object to others, so much that he becomes a multilayered composition of himself, owned by others ‘in all possible layers of his face and in all possible images that can come from the observation of his gestures and movements’. To be lived, the body must possess a certain degree of distance, which can be annihilated or augmented, depending on our capability to oppose. We desire that our bodies be respected; we draw boundaries which match our needs, building a home for our bodies” (in “Corpo, sguardo e silenzio”, 1965).

In the end, Iaconesi had a successful surgery to remove the cancer.

 

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