Skip to main content
Part of complete coverage on

My open source cure for brain cancer

By Salvatore Iaconesi, Special to CNN
updated 1:14 PM EST, Sun November 25, 2012
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
updated 5:01 PM EDT, Wed October 22, 2014
Paul Callan says the grand jury is the right process to use to decide if charges should be brought against the police officer
updated 12:19 PM EDT, Thu October 23, 2014
Theresa Brown says the Ebola crisis brought nurses into the national conversation on health care. They need to stay there.
updated 6:35 PM EDT, Tue October 21, 2014
Patrick Hornbeck says don't buy the hype: The arguments the Vatican used in its interim report would have virtually guaranteed that same-sex couples remained second class citizens
updated 9:48 PM EDT, Sat October 25, 2014
Paul Begala says Iowa's U.S. Senate candidate, Joni Ernst, told NRA she has right to use gun to defend herself--even from the government. But shooting at officials is not what the Founders had in mind
updated 6:08 PM EDT, Thu October 23, 2014
John Sutter: Why are we so surprised the head of a major international corporation learned another language?
updated 5:54 PM EDT, Thu October 23, 2014
Jason Johnson says Ferguson isn't a downtrodden community rising up against the white oppressor, but it is looking for justice
updated 12:21 PM EDT, Fri October 24, 2014
Sally Kohn says a video of little girls dressed as princesses using the F-word very loudly to condemn sexism is provocative. But is it exploitative?
updated 4:06 PM EDT, Tue October 21, 2014
Timothy Stanley says Lewinsky is shamelessly playing the victim in her affair with Bill Clinton, humiliating Hillary Clinton again and aiding her critics
updated 10:14 AM EDT, Thu October 23, 2014
Imagine being rescued from modern slavery, only to be charged with a crime, writes John Sutter
updated 12:00 PM EDT, Tue October 21, 2014
Tidal flooding used to be a relatively rare occurrence along the East Coast. Not anymore, write Melanie Fitzpatrick and Erika Spanger-Siegfried.
updated 7:35 AM EDT, Tue October 21, 2014
Carol Costello says activists, writers, politicians have begun discussing their abortions. But will that new approach make a difference on an old battleground?
updated 9:12 AM EDT, Tue October 21, 2014
Sigrid Fry-Revere says the National Organ Transplant Act has caused more Americans to die waiting for an organ than died in both World Wars, Korea, Vietnam, Afghanistan and Iraq
updated 2:51 PM EDT, Tue October 21, 2014
Crystal Wright says racist remarks like those made by black Republican actress Stacey Dash do nothing to get blacks to join the GOP
updated 6:07 PM EDT, Tue October 21, 2014
Mel Robbins says by telling her story, Monica Lewinsky offers a lesson in confronting humiliating mistakes while keeping her head held high
updated 9:29 AM EDT, Mon October 20, 2014
Cornell Belcher says the story of the "tea party wave" in 2010 was bogus; it was an election determined by ebbing Democratic turnout
updated 4:12 PM EDT, Mon October 20, 2014
Les Abend says pilots want protocols, preparation and checklists for all contingencies; at the moment, controlling a deadly disease is out of their comfort zone
updated 11:36 PM EDT, Sun October 19, 2014
David Weinberger says an online controversy that snowballed from a misogynist attack by gamers into a culture war is a preview of the way news is handled in a world of hashtag-fueled scandal
updated 8:23 AM EDT, Mon October 20, 2014
Julian Zelizer says Paul Krugman makes some good points in his defense of President Obama but is premature in calling him one of the most successful presidents.
updated 10:21 PM EDT, Sun October 19, 2014
Conservatives can't bash and slash government and then suddenly act surprised if government isn't there when we need it, writes Sally Kohn
updated 8:05 AM EDT, Wed October 22, 2014
ISIS is looking to take over a good chunk of the Middle East -- if not the entire Muslim world, write Peter Bergen and Emily Schneider.
updated 9:00 AM EDT, Mon October 20, 2014
The world's response to Ebola is its own sort of tragedy, writes John Sutter
updated 4:33 PM EDT, Fri October 17, 2014
Hidden away in Russian orphanages are thousands of children with disabilities who aren't orphans, whose harmful treatment has long been hidden from public view, writes Andrea Mazzarino
updated 1:22 PM EDT, Sat October 18, 2014
When you hear "trick or treat" this year, think "nudge," writes John Bare
updated 12:42 AM EDT, Sat October 18, 2014
The more than 200 kidnapped Nigerian schoolgirls have become pawns in a larger drama, writes Richard Joseph.
updated 9:45 AM EDT, Fri October 17, 2014
Peggy Drexler said Amal Alamuddin was accused of buying into the patriarchy when she changed her name to Clooney. But that was her choice.
updated 4:43 PM EDT, Thu October 16, 2014
Ford Vox says the CDC's Thomas Frieden is a good man with a stellar resume who has shown he lacks the unique talents and vision needed to confront the Ebola crisis
updated 4:58 AM EDT, Sat October 18, 2014
How can such a numerically small force as ISIS take control of vast swathes of Syria and Iraq?
updated 9:42 AM EDT, Fri October 17, 2014
How big a threat do foreign fighters in Syria and Iraq pose to the West? It's a question that has been much on the mind of policymakers and commentators.
updated 8:21 AM EDT, Fri October 17, 2014
More than a quarter-million American women served honorably in the Iraq and Afghanistan wars. Now they are home, we have an obligation to help them transition back to civilian life.
updated 4:27 PM EDT, Thu October 16, 2014
Paul Begala says Rick Scott's deeply weird refusal to begin a debate because rival Charlie Crist had a fan under his podium spells disaster for the Florida governor--delighting Crist
updated 12:07 AM EDT, Thu October 16, 2014
The longer we wait to engage on Ebola, the more limited our options will become, says Marco Rubio.
updated 7:53 AM EDT, Wed October 15, 2014
Democratic candidates who run from President Obama in red states where he is unpopular are making a big mistake, says Donna Brazile
updated 12:29 AM EDT, Thu October 16, 2014
At some 7 billion people, the world can sometimes seem like a crowded place. But if the latest estimates are to be believed, then in less than a century it is going to feel even more so -- about 50% more crowded, says Evan Fraser
updated 12:53 PM EDT, Mon October 20, 2014
Paul Callan says the Ebola situation is pointing up the need for better leadership
updated 6:45 PM EDT, Wed October 15, 2014
Nurses are the unsung heroes of the Ebola outbreak. Yet, there are troubling signs we're failing them, says John Sutter
updated 1:00 PM EDT, Wed October 15, 2014
Dean Obeidallah says it's a mistake to give up a business name you've invested energy in, just because of a new terrorist group
updated 7:01 PM EDT, Wed October 15, 2014
Fear of Ebola is contagious, writes Mel Robbins; but it's time to put the disease in perspective
updated 1:44 PM EDT, Tue October 14, 2014
Oliver Kershaw says that if Big Tobacco is given monopoly of e-cigarette products, public health will suffer.
updated 9:35 AM EDT, Sat October 18, 2014
Stop thinking your job will make you happy.
updated 10:08 PM EDT, Tue October 14, 2014
Ruben Navarrette says it's time to deal with another scandal involving the Secret Service — one that leads directly into the White House.
updated 7:25 AM EDT, Tue October 14, 2014
Americans who choose to fight for militant groups or support them are young and likely to be active in jihadist social media, says Peter Bergen
updated 9:03 AM EDT, Mon October 13, 2014
Stephanie Coontz says 11 years ago only one state allowed same sex marriage. Soon, some 60% of Americans will live where gays can marry. How did attitudes change so quickly?
updated 4:04 PM EDT, Tue October 14, 2014
Legalizing assisted suicide seems acceptable when focusing on individuals. But such laws would put many at risk of immense harm, writes Marilyn Golden.
updated 9:07 AM EDT, Mon October 13, 2014
Julian Zelizer says the issues are huge, but both parties are wrestling with problems that alienate voters
updated 6:50 PM EDT, Mon October 13, 2014
Mel Robbins says the town's school chief was right to cancel the season, but that's just the beginning of what needs to be done
updated 11:43 AM EDT, Sat October 11, 2014
He didn't discover that the world was round, David Perry writes. So what did he do?
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT