When Iaconesi was diagnosed with a brain tumor in August, he felt that he had gone from being a person to being a patient. In a recent TED talk, he explained that the clinical data relating to his cancer was written in “a language different from that of human beings.” It was also largely inaccessible to him in that it was exclusively in the hands of his doctors.
Meanwhile, as a person with cancer, he had many questions that the data could not answer. “Can I work? Can I have fun? Can I be creative? Can I study? Can I make love?”
To create a bridge between the technical language of his diagnosis and the language of humans, he hacked his medical records. That is, he digitized them into a downloadable open format – “transformed them into a very personal version of data” – and made them accessible on his La Cura website. He could read notes from an array of specialists and view his various brain scans. And so could everyone else.
Through the site, he solicited “cures” from anyone and everyone, and for everything from treating his tumor to lifting his spirit. “Artists, designers, hackers, scientists, doctors, photographers, video makers, musicians, writers. Anyone can give me a CURE,” he states on his site.
Since he made his appeal, he has received 50,000 pieces of advice, regarding official medicine, alternative therapy, the restorative effects of a good vacation and more. People wrote him poems and sent him book suggestions. Some created new works of sculpture and multimedia art, including a rapid-prototyped version of Iaconesi’s tumor, and a video of the tissue mass, projected at a rock concert. About 50 doctors wrote in, 40 of which were reviewed by 500 of their patients. One neuro-chemist told Iaconesi that he was experimenting with a nanotechnology solution to a similar cancer.
Not only did he create a database of collective wisdom – mapping them out on an infographic to see how they interconnected – he also designed his own treatment strategy: a harmonious mix of surgery, oncology, homeopathy, Chinese medicine, Hebraic esoterism, diet and lifestyle.
But for Iaconesi, the medium is the real message. His website, which he hopes will be of use to anyone going through a similar situation, represents “a good use for real life, human technology.” In fact, the Italian Ministry of Health has indicated an interest in making patient records more accessible through an open format. This, they hope, would put all of the knowledge, and the power to seek alternative points of view on their treatments, into the hands of the people.