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How one man tapped into the Web to crowd-source a cure for his cancer

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Toronto Star:  Jennifer Yang (Global Health Reporter)

cancer crowdsource health - How one man tapped into the Web to crowd-source a cure for his cancer

In a few weeks, a team of surgeons will slice open Salvatore Iaconesi’s head and attempt to remove the tumour growing inside his brain. But on the Internet, Iaconesi has already opened up his head — and his private medical records — for the world to see.

In early September, Iaconesi “hacked” his own medical information and posted his CT scans, MRI images and health records on his website La Cura.

“Anyone can give me a cure,” he wrote in an open invitation.

By publishing his medical information online, Iaconesi is crowd-sourcing a cure for his cancer. But for the 39-year-old Italian artist, hacker and engineer, the “cure” he seeks is not strictly a medical one.

“There are cures for the body, for spirit, for communication,” he wrote on his website, which went live on Sept. 10. “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.”

Tens of thousands have since answered Iaconesi’s call and he has received more than 600 poems, dozens of videos and countless testimonials from patients around the world. Artists have also found inspiration in Iaconesi’s brain scans and medical data, creating everything from drawings and visual performances to an online model of his tumour that can be printed using a 3-D printer.

Approximately 60 doctors from around the world — Italy, Germany, Brazil, Britain, the United States — have also been in touch, offering medical opinions, expertise and even their own services at a discount. Some are also now in conversation with each other, discussing best strategies and techniques for Iaconesi to beat his cancer.

“We are actually following the combined advice of multiple doctors, internationally,” said Iaconesi, who spoke to the Toronto Star through a series of emails and a brief phone conversation. “There isn’t a single doctor (who) is handling all this but rather, a network of doctors and professionals, with which we work collaboratively to make our decisions.”

In late August, Iaconesi fainted after going for a swim and banged his head. He woke up in a hospital and, after multiple tests, was told he had a glioma, a malignant tumour that grows from the brain’s supportive tissues.

Iaconesi wanted to know everything about his disease and treatment options. But he felt excluded from the medical conversation — his doctors spoke about him constantly but did not seem to speak to him. One surgeon, for example, balked when Iaconesi asked him to explain his exact surgical technique.

“Patients, most of the time, are denied this kind of discussion,” Iaconesi said. “They are forced to stay there and wait for someone to tell them what will happen, in a way which is not understandable.”

So Iaconesi decided to leave the hospital. But first, he paid 35 euros for a CD containing his medical information — which at first didn’t prove useful. The data was trapped in an obscure digital format. It could only be accessed using specific software designed for the medical community.

“I was not able to do anything with this information,” he said. “Most of all, I could not use it to become active to promote my well-being and my health. All that I could do with it was send it to the next doctor and wait.”

So Iaconesi “hacked” the data. He downloaded a series of software programs and converted the information into formats that were accessible.

His medical record could now be published on social networks, attached to emails and accessed by anyone with a computer or smartphone. Since creating La Cura, more than 500,000 people have clicked on his website, Iaconesi said.

Processing the deluge of information has been logistically challenging, so a network of people have been helping Iaconesi filter and process the emails flooding his inbox — more than 20,000 so far, he estimates.

Among those who have reached out is Dr. Jimmy Lin, a Washington University research instructor in St. Louis, Mo.

Like Iaconesi, Lin is a fellow of TED, the non-profit behind the popular ideas-based TED talks and conferences that recruits 40 young innovators every year to its fellows program. He thinks deeply on issues of openness and transparency; as the president of the Rare Genomics Institute in Missouri, he is also familiar with the power of crowd-sourcing. His non-profit organization uses crowd-sourced funding to help patients with rare diseases gain access to cutting-edge medical technologies.

Lin was also part of the research team that first sequenced the genome of glioblastoma multiforme, the most common and deadly type of brain cancer (and, quite possibly, what is currently growing inside Iaconesi’s head).

Lin said he is connecting with Iaconesi’s doctors in Italy and, after the surgery, will receive a piece of Iaconesi’s tumour and sequence its genome.

Understanding the tumour’s genome could have immediate and practical benefits for Iaconesi, Lin said. For instance, if he does have glioblastoma multiforme, Lin could look for a specific mutation in a gene called IDH1, which is associated with a slower-growing cancer and better survival rates. If this mutation is present, then Iaconesi and his doctors may decide to use a less aggressive course of treatment, Lin said.

Lin said he admires Iaconesi’s initiative, which may have a positive impact beyond just one man’s brain. On Sept. 18, an Italian member of parliament, having read about Iaconesi’s story in the local press, proposed making medical records more open and accessible for all patients so that anyone can easily share their medical information.

“I think it’s very courageous and bold for him to really embrace his illness and really make it something for good,” Lin said. “I really applaud his efforts and his efforts will have an impact not only on him but for all future patients, as he’s pushing more for openness.”

Lin said the main challenge for Iaconesi will be figuring out how to make sense of the mass of information that has suddenly become available to him.

For Iaconesi, however, the key to understanding his crowd-sourced “cure” is to employ the same tool that helped him to find it: the Internet, with all its power to harness information and build networks.

“I am not looking for a ‘miracle cure’ and I perfectly know that I can’t become an expert in brain tumours overnight,” Iaconesi said. “And if you think about it, I don’t need to become an expert on brain cancer overnight, as (there) is the network of people who are collaborating together to constitute a great, multi-domain, expert.”

Source:  here

share save 171 16 - How one man tapped into the Web to crowd-source a cure for his cancer

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