Health TED Fellows

How Salvatore Iaconesi has started a movement for open-source medical files

Posted by: Kate Torgovnick May

In early September, data artist and TED Fellow Salvatore Iaconesi announced to the world that he had brain cancer. And he refused to let his medical records stay sealed. “They were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life,” he explained on his website. “I cracked them. I opened them and converted the contents into open formats, so that I could share them with everyone.” He asked anyone with a “cure,” be it a medical treatment or “a video, an artwork, a map, a text, a poem, a game,” to send it his way.

The outpouring of support Iaconesi has received through his website has been tremendous, and he is posting every cure he has received — 300 so far — by mapping them on the image above. Many of the responses have come from those with medical expertise; Iaconesi tells Wired Italy he has heard from “about 60 doctors, including surgeons and experts in neuroradiology. [Of] about 40 of these, we also talked about their former patients or family members of patients.”

But Iaconesi’s openness is having other ripple effects too. Last week in Italy, four deputies of the Democratic Party presented Iaconesi’s initiative to the Ministry of Health, asking them to consider the possibility of releasing all Italian citizens’ clinical data in a fully open format. “The digitization of health information is a useful tool because it cancels distance and time, allowing sick people to reach — potentially — anyone, anywhere,” the ministers write of their initiative.

Late last week, Iaconesi made a surprise appearance at TEDxTransmedia, at the MAXXI Museum in Rome and dedicated to the theme of “Dreamers, Geeks, Mindshifters.” Iaconesi’s talk will be available on YouTube shortly.

And tomorrow, he will present an installation, performance and talk on open data at the Internet Festival in Pisa.

On Iaconesi’s website, take a look at the section “A Random Cure” to check out the videos, photos, letters of encouragement and medical ideas that Iaconesi has received. As you load cures, watch how they toggle on Iaconesi’s beautiful map, creating a web of possibility.