Skip to main content
Part of complete coverage on

My open source cure for brain cancer

By Salvatore Iaconesi, Special to CNN
November 25, 2012 -- Updated 1814 GMT (0214 HKT)
STORY HIGHLIGHTS
  • Salvatore Iaconesi: I was diagnosed with brain cancer at the age of 39
  • He says he decided to put his medical records online, invite world to help find a cure
  • More than 200,000 people have visited site; many have provided valuable information, support
  • Iaconesi: I'm following a complex set of therapies before deciding on surgery

Editor's note: Salvatore Iaconesi is a 39-year-old TED fellow and the artist and technologist behind Art is Open Source. He teaches digital design at La Sapienza University of Rome. His medical records are publicly available at artisopensource.net/cure. Iaconesi spoke in September at TEDx Transmedia, an independently organized event in Rome. TED is a nonprofit organization dedicated to "Ideas worth spreading" which it makes available through talks posted on its website.

(CNN) -- I was recently diagnosed with brain cancer.

This was shocking news. Sitting across from a doctor holding a clinical folder with your name on it, and hearing him say the words "low-grade glioma," "language and comprehension areas of your brain," "surgery" and "chemotherapy" is a very weird experience.

My first idea was to seek other opinions. Maybe this hospital is wrong. Maybe there are other places that wouldn't need to do surgery. Maybe there is a laser, a chemical, an ancient tradition, a shaman, a scientist, a nanorobot.

I felt incomplete about the way that the medical system was handling my situation.

Become a fan of CNNOpinion
Stay up to date on the latest opinion, analysis and conversations through social media. Join us at Facebook/CNNOpinion and follow us @CNNOpinion on Twitter. We welcome your ideas and comments.



Being "diseased" is like a state of suspended life. Can I work? Have fun? Be creative? Not really.

When you are declared "diseased," you become a set of medical records, therapy, dosages, exam dates. It's as if you disappear, replaced by your disease.

I immediately asked for my clinical records in digital format, and left the hospital.

TED.com: A new understanding of cancer

My main objective -- the best thing I felt that I could do -- was to make my digital information available on the Internet, in formats that would allow people of multiple cultures, skills, professions and inclinations to access, use, recombine and redistribute it.

5-time cancer survivor pays it forward
Fighting cancer with fashion
November is Lung Cancer Awareness Month
Can vitamins help fight off cancer?

Why would I want them to access this information?

To help me find the best cure for myself, and in the process to produce substantial social change by redefining the word "cure."

But when I went home to publish my medical records, all I could do was send them to specialized professionals, either by duplicating the CDs and mailing them or by copying their closed format and uploading them somewhere.

I had no direct access to my own information, since I use Linux and OSX rather than the files' Windows-based viewer. As a software engineer, I found software and programming tools to hack the files and make them open -- but a nontechnical person would have difficulty making use of their own medical data.

I needed, first of all, something which I could easily share, maybe allowing people to open it from their browsers, or even from their smartphones.

TED.com: New strategy in war on cancer

So I opened up my medical records and converted the data into multiple formats: spreadsheets, databases, metadata files in XML and video, image and sound files. And I published them on The Cure.

The responses have been incredible. More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures -- and simply the statement, "I am here." Among them were more than 90 doctors and researchers who offered information and support.

The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of my tumor after surgery -- in an open-source platform, of course. And the Italian parliament has been debating a motion to make all patients' medical records more open and accessible, which would be amazing progress in my country.

Within one day I also heard from two different doctors, who recommended similar kinds of surgery. The first version is "awake surgery," which monitors the brain in real time as different parts are touched. The second is a variation in which electrodes are placed on the brain during surgery, and then a brain map is produced (with the patient awake) and used during a second surgery (with the patient fully unconscious).

TED.com: Your genes are not your fate

Existing portals and websites that allow patients and ex-patients to exchange stories and opinions already exist. But we're talking about something different.

I see a cure as a dynamic process, in which multiple doctors, professionals, artists, scientists and others join as a society -- to converse, support each other, be open to various contributions and shape solutions that merge humanity, technology, technique, philosophy and art. Creativity and "normal life" become part of the process and bring "diseased" people back to life.

To me, a true cure is complete, is human, and has dignity. And it never ends.

Such a cure is a dialogue in which "experts" maintain their status -- and in fact, an enormous thank you goes out to all the extremely qualified professionals who are constantly responding to my calls -- but the whole process opens up to possibility.

TED.com: The potential of regenerative medicine

And this is exactly what is happening: We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers. The active participation of everyone involved -- both experts and ex-patients -- is naturally filtering out any damaging suggestion which might be proposed.

To achieve this kind of cure, we must be open to strategies from different cultures and philosophical orientations. And we must embrace a wider, more profound discourse about the ways in which information circulates digitally.

For now, I'm following a complex strategy developed with the help of a series of doctors and experts who responded to my open-source cure site and have suggested a variety of therapies to deal with the disease.

As of now, my cancer growth has stopped. We are waiting for the next test results to decide when and if to proceed to surgery.

How can you be involved? Tell us about excellent techniques and technologies from around the world that can effectively confront low-grade glioma. We have explored many opinions in Italy and Europe, but fewer outside.

Share your stories and experiences, the solutions you have found, the fraud you have encountered.

Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure.

Or tell us, "I am here!" -- alive and connected, ready to support a fellow human being.

Follow @CNNOpinion on Twitter.

Join us at Facebook/CNNOpinion.

The opinions expressed in this commentary are solely those of Salvatore Iaconesi.

ADVERTISEMENT
Part of complete coverage on
September 13, 2014 -- Updated 1620 GMT (0020 HKT)
Joe Torre and Esta Soler say much has been achieved since a landmark anti-violence law was passed.
September 12, 2014 -- Updated 2055 GMT (0455 HKT)
David Wheeler wonders: If Scotland votes to secede, can America take its place and rejoin England?
September 12, 2014 -- Updated 2207 GMT (0607 HKT)
Jane Stoever: Society must grapple with a culture in which 1 in 3 teen girls and women suffer partner violence.
September 12, 2014 -- Updated 2036 GMT (0436 HKT)
World-famous physicist Stephen Hawking recently said the world as we know it could be obliterated instantaneously. Meg Urry says fear not.
September 12, 2014 -- Updated 2211 GMT (0611 HKT)
Bill Clinton's speech accepting the Democratic nomination for president in 1992 went through 22 drafts. But he always insisted on including a call to service.
September 12, 2014 -- Updated 2218 GMT (0618 HKT)
Joe Amon asks: What turns a few cases of disease into thousands?
September 12, 2014 -- Updated 1922 GMT (0322 HKT)
A Scottish vote for independence next week could trigger wave of separatist tension in Europe, says Frida Ghitis.
September 12, 2014 -- Updated 2212 GMT (0612 HKT)
You couldn't call him a "Bond villain" in the grand context of Dr. No or Auric Goldfinger. They were twisted visionaries of apocalypse whose ideas were to be played out at humanity's expense.
September 12, 2014 -- Updated 1705 GMT (0105 HKT)
As a Latina activist I was hurt to hear the President would delay executive action to keep undocumented immigrants with no criminal record from getting deported.
September 11, 2014 -- Updated 1721 GMT (0121 HKT)
Sally Kohn says bombing ISIS will worsen instability in Iraq and strengthen radical ideology in terrorist groups.
September 11, 2014 -- Updated 2224 GMT (0624 HKT)
Stevan Weine says the key is to stop young people from acquiring radicalized beliefs in the first place.
September 11, 2014 -- Updated 1730 GMT (0130 HKT)
Analysts weigh in on the president's plans for addressing the threat posed by the Islamic State of Iraq and Syria.
September 11, 2014 -- Updated 1227 GMT (2027 HKT)
US Currency is seen in this January 30, 2001 image. AFP PHOTO/Karen BLEIER (Photo credit should read KAREN BLEIER/AFP/Getty Images)
Lisa Gilbert says a million people have asked the SEC to make corporations disclose political contributions.
September 11, 2014 -- Updated 0455 GMT (1255 HKT)
Christi Paul says unless you've walked in an abused woman's shoes, don't judge her, help her get answers to the right questions: Why does he get to hit her? And why does nobody do anything to stop him?
September 10, 2014 -- Updated 1932 GMT (0332 HKT)
Mel Robbins says several other NFL players arrested recently in domestic violence are back on the field. Roger Goodell has shown he is clueless on abuse. He must go.
September 10, 2014 -- Updated 1759 GMT (0159 HKT)
Newt Gingrich says President Obama has a remarkable opportunity Wednesday night to mobilize support for a coalition against ISIS.
September 11, 2014 -- Updated 0041 GMT (0841 HKT)
The Texas senator says Obama should seek congressional authorization for a major bombing campaign vs. ISIS.
September 11, 2014 -- Updated 1327 GMT (2127 HKT)
Artist Prune Nourry's project reinterprets the terracotta warriors in an exhibition about gender preference in China.
September 10, 2014 -- Updated 1336 GMT (2136 HKT)
The Apple Watch is on its way. Jeff Yang asks: Are we ready to embrace wearables technology at last?
ADVERTISEMENT