Italian man makes worldwide plea for best brain cancer treatment
Published Sunday, November 18, 2012 5:47PM EST
Last Updated Sunday, November 18, 2012 11:17PM EST
Salvatore Iaconesi is looking for a cure for his brain cancer and he’s asking the world to help.
The Italian engineer has posted his medical records online and made an appeal via YouTube in an effort to find the best treatment for the disease, after receiving his diagnosis earlier this year.
Iaconesi said the experiment came out of his frustration with a health-care system that he says was treating him too little like a person and too much like a patient. Iaconesi sought out another route, launching an experiment dubbed La Cura in Italian, or “open cure.”
“In more than one way, you’re not a human being anymore,” Iaconesi said. “In some ways you are replaced by your clinical records.”
He posted a video to YouTube in September explaining his situation. The video, entitled “My Open Source Cure,” begins with Iaconesi saying “I have a brain cancer.” In order to find a solution, he converted all his medical documents and posted them online in what he describes as “open, accessible formats.” He then asks viewers to look over these documents and offer him advice.
Within a day of posting his medical documents online, two doctors responded and offered him advice. Iaconesi said that both doctors offered advice on their own time, from home.
Since then Iaconesi has received thousands of responses offering him treatment suggestions and words of support.
The “open cure” concept is a trend that is growing thanks to social media and networking. It began with Jeff Howe coining the term “crowdsourcing” – the idea of going online to collaborate on ideas. Now the health care sector is figuring out ways to apply this idea to find cures and treatments.
U.S.-based MS Futures Group focused research on this growing trend. It found that the influx of social network users, combined with the growth of health apps for smartphones, led to this increase in open source health care.
According to its research these collaborations have the potential to facilitate a new way of understanding disease and response to treatment. The group also concluded that crowdsourcing has the potential to speed up health-care discoveries.
Health organizations are also embracing the trend. One organization called Open Source Drug Discovery is already pushing for crowdsourcing in the drug industry beyond pharmaceutical companies. Canadian non-profit organization St. Elizabeth’s also hosted an event called “Crowdsourcing for Health Innovation” on Oct. 16, to examine how collaboration could influence the health sector.
Prof. Umar Ruhi from the University of Ottawa said Iaconesi’s experiment is part of a growing trend among patients to seek out greater emotional support, as well as more ideas for care.
“It’s re-humanizing his experience as a patient. He’s no longer just a passenger. He’s a driver of his own health care,” said Ruhi.
Iaconesi will be undergoing surgery in the next few weeks followed by alternative therapies.
In a statement on his website, he lists dietary strategies, changes in lifestyle, homeopathic oncology and traditional Chinese medicine as a few of the suggestions he has received that have generated the best results. In the same Oct. 22 statement he adds, “I am fine, and I am getting ready to feel even better.”
Iaconesi will also publish all the solutions he has received on his website.
“Finding a cure is a tall order, but he might be able to find alternatives that work for him…from others,” said Ruhi.
With a report from CTV’s medical specialist Avis Favaro and producer Elizabeth St. Philip