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Emergent Communities and Open Source Cure

created for the Remediating the Social conference in Edinburgh, the presentation narrates our efforts in researching innovative, peer-to-peer creative practices, and the story of the Open Source Cure as an example of our approach.

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Emergent Communities and Open Source Cure

  1. 1. EMERGENTCOMMUNITIES and Open Humanity @Remediating the Social Salvatore Iaconesi & Oriana Persico [ Art is Open Source ]
  2. 2. EMERGENT CREATIVE COMMUNITIESand the ways in which they interact with territories, networks, technologies, cities
  3. 3. We’ve worked onthis in the past ...
  4. 4. researched what can beaccomplished by creating afake institution which actsas an open source meta-brand with theRomaEuropa
  5. 5. observed how can openAugmented Reality andubiquitous technologies beused as tools formovements and collectives,creating new ways ofpublishing informationanywhere and enactinglocation based actions andperformances easily andaccessibly for everyone
  6. 6. explored how we couldcreate a widespread p2ppeople activation byinventing an augmentedreality drug usable for thereinvention of reality
  7. 7. analyzed how to transformhigh school students of thecity of Pompei in Italy intodesigners of their digitalcity, creating businessmodels, participationpractices, peer to peerenvironments for creativityand governance
  8. 8. engaged a whole territoryin the south of Italy tocreate an augmented realitymovie using open sourcetechnologies, to explorehow it is possible to createtools and practices throughwhich digital technologiesand networks can be usedby people to coordinate,participate, and createtogether, inventing neweconomies and practices
  9. 9. understood how to capture real-time information from social networks and use it to create open tools usable by people to understand what happens in their city, what are peoples emotions, ideas and thoughts about the environment, city governance, energy, lifestyle, and the possibility to organize themselves in p2p ways, creating businesses, art, politics in novel ways
  10. 10. and then... Digital Manual understand the relationshipsand processes through whichcreative communities emergearound digital publishing tools of many kinds
  11. 11. our point of view: it is not really interesting, for us, to create communities
  12. 12. It is really interesting, instead, torecognize communities in how theyemerge, and to understand how todesign and develop tools to support them, to enable them to assemble, to recombine, to collaborate, to createbusiness models, communication models, ways to interact with organizations and institutions
  13. 13. To enable expression of multiple points of view, organized in networks which can spread out along territories, topics,visions on the future, ethics, cultures, also in temporary ways.
  14. 14. We dont reallyappreciate the idea of"creating" a community
  15. 15. as we feel it is a process which has already beenindustrialized
  16. 16. there is much buzz about the"third industrial revolution"
  17. 17. maybe we should question ourselves if the term "industry" is really fitting to describethe possibilities which are opening up in these complex times
  18. 18. powerful innovation sitswhere it is possible to create open methodologies, infrastructures, tools and education...
  19. 19. and use them to perform, topractice, to act in the creation of liberated zones where things can really happen
  20. 20. a possibilistic environment
  21. 21. we will talk about this from a peculiar point of viewand a very personal, networked story, which is happening to us, right now
  22. 22. this september I have been diagnosed with a brain cancer
  23. 23. I was not really satisfied about the way in which hospitals were handling my situation
  24. 24. as soon as I was declared officially "diseased" it was almost as if i disappeared, replaced by my clinical data, protocols and procedures
  25. 25. I was, by all effects, industrialized: i was not a human being anymore, I became a "patient"
  26. 26. In different cultures the words "disease" and "cure" can mean many different things, relating to the body, to society,to relationships and the environment
  27. 27. I felt that medicine was only assessing very few parts of this, interpreting my body in terms of its componentsand leaving out all the rest, in an over-simplification which really left me unsatisfied
  28. 28. especially thinking about cancer which is a very peculiar disease, having to do with the ways in whichwe eat, with the environment we live in, and with our lifestyle
  29. 29. So I decided to leave the hospital
  30. 30. I gave the hospital administration 35eurosand grabbed my medical records in digital format...
  31. 31. ...with the idea that they could be published on the web to share them with as many people as possible, interweaving sciences, design, arts,traditions and spirituality, aiming at the creation of a "cure" which could confront with all the spheres which describe a human being
  32. 32. As soon as I arrived home I had a sad surprise
  33. 33. The clinical data was distributed using a format which is, technically, open But it constitutes a very interesting parallelwith the ways in which medicine handled my disease
  34. 34. The language which the doctor usesto tell you that “you have cancer” is technically open, but its not really accessible:it uses words which you dont understand and it is not really made for you
  35. 35. In a way,a doctor is not really talking to you when he/she explains your condition he is talking about you, using language which is intended for his colleagues, and not even enabling you to understand all the different options which are available to you, ranging from diets, homeopathy, traditional medicine and, yes, surgery, chemiotherapy etcetera
  36. 36. Once a doctor replied to me “you dont think that i will really explain to you how thesurgery technically works! You need to have your head opened up and cancer removed! Thats all you need to know!” of course i want to know everything! and as clearly as possible!
  37. 37. The data format used in the digital clinical records was just like that. It was technically open, but it was notintended for me to do anything with it.
  38. 38. It included a "reader" software (which only worked on Windows computers, by the way) but you could not do anything at allwith the data and images included in it
  39. 39. You could only send itto another professional doctor and have him or her look at it
  40. 40. No traditional medicine. No homeopathy. No arts. No printing. No exporting. No sharing online.
  41. 41. My own data was not made for me it was made for bureaucratic and administrative tasks
  42. 42. Open Bureaucratic Data
  43. 43. Again, it was about me, but it was not me
  44. 44. It did not answer the common questions which someone who is diagnosed cancer has every minute of his life: does my life stop? can i work? can i be creative? can i make love?can i find out other information?
  45. 45. I hacked the data format and converted it to a set of ones which are easier to use:PNGs and JPGs for images, XML for data etcetera
  46. 46. And i created a website: My Open Source Cure
  47. 47. “Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game,or try to find a solution for my health problem. Artists, designers, hackers, scientists, doctors,photographers, videomakers, musicians, writers. Anyone can give me a CURE.”
  48. 48. In a way, I was asking everyone to take part in my disease. Beyond medicine, beyond science, beyond protocols, beyond administration and bureaucracy
  49. 49. This is what happened
  50. 50. an incredible network formed almost immediately, combining the contributions of thousands of doctors, scientists, researchers, artists, designers, musicians, videomakers, ex-patients, friends and relatives of people who had died from cancer
  51. 51. more than 30 videos dozens of music trackshundreds of poems and narratives 3 performances dozens of visual designsa projection mapping on a building an electronic music concert
  52. 52. Patrick Lichty even produceda 3D model of my tumor,and put it on Thingiverse,so that you can print it out in 3D:you can have my cancer, too if you want.
  53. 53. More than 90 doctors and researcherscontacted me, offering information and support.
  54. 54. Multiple of their ex-patients contacted me as well, telling me about their attitude, the effectiveness of their cures for them, the quality of the hospitals they operated in.
  55. 55. BBC, CNN, Folhio de S. Paulo, NewScientist, Repubblica, the Wall StreetJournal, Wired and many more news, television and online operators worldwide gave coverage of what happened
  56. 56. I received around 200kadvices about how to cure myself, ranging from hi-tech medicine, to surgery, to diet suggestions, to magic, to esotheric remedies.
  57. 57. Many of them had the remarkable characteristic of describing the same healing processes using different languages.
  58. 58. It was really a lot of informationthere was no way in which i could have processed it by myself
  59. 59. The emergent network, again, was the solution:hundreds of people helped me out to process the info, tagging it, comparing it, and pointing out themost remarkable bits of it, even arriving at the level ofindependently contacting the doctors, sciamans and scientists proposing the remedies and techniques, to know more details.
  60. 60. And then the conversations started: experts, people, patientsstarted discussing autonomously.
  61. 61. As of now, my "cure" is composed by the harmonious contributions of a neuro surgeon, an oncologist, a holistic oncologist, a traditional chinese doctor, a neuro-radiologist,an expert on macrobiotics and nutrition a sciaman all talking and discussing their techniques together, understanding how to combine them harmoniously.
  62. 62. This is something that rarely, if never, happens. And it is remarkable, as it manages to confront with the human being in its wholeness: as a body, as part of a society,as a bearer of emotions, feelings and expectations.
  63. 63. a team has formed, inspired by what is happening.
  64. 64. we are working on a set of tools to go beyond medicine, talking to the people who have invented Open Medicine up to now, and to the ones which are discussing about eHealth, and to the ones who feel that a “revolution” in this domain could go way beyond all of this
  65. 65. transforming disease, medicine, cures into an open environment in which human beings are ableto relate, to communicate, to inform,to be creative, to confront critically, to experience, to support.
  66. 66. it is all very different from the ideas ofopen data, open government, open everything that is being discussed worldwide today.
  67. 67. it is not about some people inventing something, it is about everyone having the tools to do what they need to, as this need emerges, in open, shareable, efforts
  68. 68. it is not about industrializing data, or spectacularizing information, or business-modeling crowds, which is what happens most of the time when we speak about open data, open communities, smart cities etcetera
  69. 69. it is about anthropologizing digital technologies and networks, enabling innovation to emerge autonomously and conversationally, and re-thinking the idea of governments and organizations as producers and maintainers of tools and infrastructures which neutrally support the expression of multiple voices,their interconnection and their collaboration.
  70. 70. Everything will be fine
  71. 71. And an incredible thing is taking place:people are actually taking into serious consideration a novel way of doing things on a delicate subject such as human health.
  72. 72. an Open Source Cure for you and for me :)
  73. 73. Salvatore IaconesiOriana Persico