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.
www.artisopensource.net
4. researched what can be
accomplished by creating a
fake institution which acts
as an open source meta-
brand with the
RomaEuropa Fake
Factory
www.romaeuropa.org
5. observed how can open
Augmented Reality and
ubiquitous technologies be
used as tools for
movements and collectives,
creating new ways of
publishing information
anywhere and enacting
location based actions and
performances easily and
accessibly for everyone
http://bit.ly/RGKILS
http://bit.ly/PBaFOz
http://bit.ly/PBaxP0
6. explored how we could
create a widespread p2p
people activation by
inventing an augmented
reality drug usable for the
reinvention of reality
http://bit.ly/UgZMnH
7. analyzed how to transform
high school students of the
city of Pompei in Italy into
designers of their digital
city, creating business
models, participation
practices, peer to peer
environments for creativity
and governance
http://bit.ly/YDUiTG
8. engaged a whole territory
in the south of Italy to
create an augmented reality
movie using open source
technologies, to explore
how it is possible to create
tools and practices through
which digital technologies
and networks can be used
by people to coordinate,
participate, and create
together, inventing new
economies and practices
http://bit.ly/RedYtu
http://bit.ly/n9ZJ10
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 people's
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
http://bit.ly/RRVFYY http://bit.ly/JuIXOk
novel ways
10. and then...
Digital Manual
understand the relationships
and processes through which
creative communities emerge
around digital publishing tools
of many kinds
http://bit.ly/RRWu4f
11. our point of view:
it is not really
interesting, for
us, to create
communities
12. It is really interesting, instead, to
recognize communities in how they
emerge, and to understand how to
design and develop tools to support
them, to enable them to assemble, to
recombine, to collaborate, to create
business models, communication models,
ways to interact with organizations
and institutions
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.
15. as we feel it is a process
which has already been
industrialized
16. there is much buzz about the
"third industrial
revolution"
17. maybe we should question
ourselves if the term
"industry"
is really fitting to describe
the possibilities which are opening up
in these complex times
23. I was not really satisfied about the way in which
hospitals were handling my situation
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. I was, by all effects, industrialized:
i was not a human being anymore,
I became a "patient"
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. I felt that medicine was only
assessing very few parts of this,
interpreting my body in terms
of its components
and leaving out all the rest,
in an over-simplification
which really left me unsatisfied
28. especially thinking about cancer
which is a very peculiar disease,
having to do with the ways in which
we eat, with the environment we live in,
and with our lifestyle
30. I gave the hospital administration
35euros
and grabbed my medical records in
digital format...
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. As soon as I arrived home I had a sad surprise
33. The clinical data was distributed using
a format which is, technically, open
But it constitutes a very
interesting parallel
with the ways in which medicine
handled my disease
34. The language which the doctor uses
to tell you that “you have cancer”
is technically open,
but it's not really accessible:
it uses words which you don't understand
and it is not really made for you
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. Once a doctor replied to me
“you don't think that i will really explain to you how the
surgery technically works! You need to have your head opened
up and cancer removed! That's all you need to know!”
of course i want to know
everything!
and as clearly as possible!
37. The data format used in the digital
clinical records was just like that.
It was technically open, but it was not
intended for me to do anything with it.
38. It included a "reader" software
(which only worked on Windows computers, by the way)
but you could not do anything at all
with the data and images included in it
39. You could only send it
to another professional doctor
and have him or her look at it
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. 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. And i created a website: My Open Source Cure
www.artisopensource.net/cure
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. In a way, I was asking everyone
to take part in my disease.
Beyond medicine, beyond science, beyond protocols,
beyond administration and bureaucracy
51. 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
52.
53. more than 30 videos
dozens of music tracks
hundreds of poems and narratives
3 performances
dozens of visual designs
a projection mapping on a building
an electronic music concert
54. Patrick Lichty even produced
a 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.
55. More than 90 doctors and researchers
contacted me, offering information and support.
56. 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.
57. BBC, CNN, Folhio de S. Paulo, New
Scientist, Repubblica, the Wall Street
Journal, Wired and many more news,
television and online operators
worldwide gave coverage of what
happened
58. I received around
200k
advices about how to cure myself,
ranging from hi-tech medicine, to surgery,
to diet suggestions, to magic, to esotheric remedies.
59. Many of them had the remarkable characteristic of describing
the same healing processes using different languages.
60. It was really a lot of information
there was no way in which i could have
processed it by myself
61. The emergent network, again, was the solution:
hundreds of people helped me out to process the
info, tagging it, comparing it, and pointing out the
most remarkable bits of it, even arriving at the level of
independently contacting the doctors, sciamans and
scientists proposing the remedies and techniques, to
know more details.
62. And then the conversations started:
experts, people, patients
started discussing autonomously.
63. 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.
64. 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.
65. a team has formed, inspired by what is happening.
66. 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
67. transforming disease, medicine, cures
into an open environment
in which human beings are able
to relate, to communicate, to inform,
to be creative, to confront critically,
to experience, to support.
68. it is all very different from the ideas of
open data, open government, open everything
that is being discussed worldwide today.
69. 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
70. 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
71. 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.
73. 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.