Crowd-sourcing a cure for cancer through the internet
- 15 October 2012
- From the section Technology
It is only natural that someone with a cancer diagnosis would turn to the web for help, even though the results are likely to terrify and reassure in equal measure.
But on getting his diagnosis, Italian robotic engineer and open-source artist Salvatore Iaconesi took things one step further.
"I did what I know best and asked for my medical records so that I could share them with as many people as possible and get as many opinions as I can," he said.
It was a brave decision and one that has touched a nerve. The site he set up - Open Source Cure - has attracted 200,000 responses since it was launched a month ago.
On the website, he invites people to help him find a cure, and he is not just talking about a medical one.
"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," he wrote.
Until September, Mr Iaconesi had felt perfectly healthy. Then one day he fainted after going swimming, hit his head and woke up in hospital.
After what he thought were routine tests, he was given some terrible news.
"I heard what no-one wants to hear - that there was a strange spot in the images of my head. I stayed at hospital for a few days and the doctors told me that I had brain cancer."
The shock at the news was almost immediately offset by surprise at the new way he was treated.
"When you become officially sick, doctors stop talking to you and start talking about medical records. They are speaking about you, but you don't understand anything about it," he said.
This left him feeling powerless, so he decided to go home and open debate up to the world wide web.
The first problem he encountered was getting the medical records online so that people could access them.
"I had a surprise because the format of the data was not really usable. Technically it is an open format but it was very complicated so I had an enormous file that I could do nothing with," he said
His engineering background meant he was able to change the format, but it wasn't an easy process, requiring him to compress images, download software and even write some code himself.
"I could do it, but not many would have been able to," he said.
Within days of launching the site, Mr Iaconesi was inundated with responses.
"It spread like wildfire. People started contacting me for a variety of reasons. People with cancer, giving me their life experiences. Also doctors started to contact me with lots of opinions, including experimental new techniques."
Some advice was less useful than others.
"I had lots of advice about counting clouds and about magical, miracle treatments that would cure you in one day," he said.
In fact he had so much information that he had to enlist help to trawl through all the data.
He adopted a typically radical approach, offering about 60 people who had contacted him access to his Gmail, Facebook and Twitter accounts so they could categorise and tag the responses.
He is keen to point out that the project is in no way anti-doctor or anti-science. In fact most of the doctors he has spoken to have been very positive about what he is doing, although one refused to share information about his surgical technique.
"He wanted to know why I needed him to explain how he would perform the surgery," said Mr Iaconesi.
"For me it is obvious that I'd want to know exactly what someone was doing inside my head. I would have second thoughts about a doctor who denied me this type of conversation," he said.
For him, the project is about empowering patients and reminding them that they are, despite their condition, first and foremost human beings.
The website has caught the attention of the Italian government, which is considering ways to open up patients' medical records and cites his project as an example of what is possible.
As electronic medical records become default, the opportunity for such collaboration is going to increase, with many seeing crowd-sourcing as the next step in medicine.
In some senses doctors have always collaborated, referring complex cases to specialists and asking other physicians for their opinion, but little has been done to involve the patient in that process.
The project has allowed some very diverse conversations.
"We have had neuroscientists talking to nutritionists, oncologists talking to those practising Chinese medicine," said Mr Iaconesi.
Personally he has gained a lot from the project.
"Things have changed a lot, from the initial linear suggestion from my doctors that the solution lay in surgery," he said.
He will have the surgery but is now in conversation with 40 different doctors about what technique should be used.
He is also planning to make provisions to have his own food in hospital after the surgery, to allow him to follow a crowd-sourced diet.
"I'm happy that a situation that was unlucky for me has turned into an opportunity to understand how to use technology, science and human goodwill in a collaborative way," he said.
And of course he would like a good outcome for his condition as well.
"I would like to see it ending with me coming out of hospital with my cancer cured, but I don't expect anything. It is just good that a large amount of people are taking into account the possibility that there are other ways to do things," he said.