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Medicine Open Source News

Finding a Crowdsourced Cure For Brain Cancer 217

Posted by samzenpus
from the fighting-the-good-fight dept.
Hugh Pickens writes "Salvatore Iaconesi, a software engineer at La Sapienza University of Rome, writes that when he was recently diagnosed with brain cancer, his first idea was to seek other opinions. He immediately asked for his clinical records in digital format, converted the data into spreadsheets, databases, and metadata files, and published them on the web site called The Cure. 'The responses have been incredible. More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures — and simply the statement, "I am here." Among them were more than 90 doctors and researchers who offered information and support.' The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of Iaconesi's tumor after surgery, and within one day Iaconesi heard from two different doctors who recommended similar kinds of 'awake surgery,' where the brain is monitored in real time as different parts are touched. A brain map is produced and used during a second surgery. 'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers. The active participation of everyone involved — both experts and ex-patients — is naturally filtering out any damaging suggestion which might be proposed,' writes Iaconesi. 'Send us videos, poems, images, audio or text that you see as relevant to a scenario in which art and creativity can help form a complete and ongoing cure. Or tell us, "I am here!" — alive and connected, ready to support a fellow human being.'"
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Finding a Crowdsourced Cure For Brain Cancer

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  • My ex (Score:5, Interesting)

    by ledow (319597) on Monday November 26, 2012 @10:39AM (#42093613) Homepage

    My ex was in chronic joint pain for years. She was told by leading medical experts that it was arthritis (before she was 30) and prescribed all kinds of arthritis medication and treatment over decades for it before giving up because nothing really worked.

    When I started living with her, I spotted lots of problems she had with movement and joints and I had to explain to her that, no, it's not normal to hurt all the time, or to dislocate your shoulder by opening a jar of sweets. We googled around, and put a lot of footwork into avoiding quackery, and ended up discovering about hypermobility syndrome (now call JHS, where J = joint) purely by chance. The doctor had never heard of it and was interested in it up to a point.

    Basically, her DNA codes a few dodgy things that make her cartilage weak. Most people have JHS in some form or another but if two people with particular bad cases coincide to make a child, the child is *generally* worse. There's also an even worse form called EDS where sufferers are in a wheelchair from birth.

    This gives some sufferers chronic pain from being a baby while others just become good ballet dancers (huge amount of flexibility in the joints, which *can* wear the joints to the point that inflammation of tissue and joint damage results). My ex was a professional black belt karate instructor throughout most of her painful years (because flexing joints made them no worse, and was not a way to induce the pain - a clear sign that it *wasn't* arthritis from the very start.

    In the end, we gave up on all the doctors she'd had previously, and researched it ourselves. We hit at random upon a rare condition that had almost zero information on it at the time. Apparently there was one guy in the country doing research on the condition when we discovered it (and other sufferers we met up with describe him as one of the most arrogant and ignorant doctors they'd ever met - telling tiny slips of girls that were not far off transparency that they were obese and he wouldn't treat them, etc.).

    We FORCED her current doctor to refer us to a specialist. We were referred to a consultant who dealt with arthritis. However, he was bright enough to look and say instantly "You don't have arthritis, you have hypermobility" and write us off with a confirmed diagnosis that the doctor would at least accept to prescribe more suitable medication for (i.e. not arthritis medication which worsens the problem because the condition is the polar opposite of arthritis).

    Beyond that, she never got much help and still has the condition. Variably over the years she's been registered disabled and able to run a karate club (though not simultaneously - the condition is always present but the severity varies greatly with seemingly random triggers and even things like the weather).

    Bear in mind that all this happened in a country with free healthcare.

    - Doctors can't know everything.
    - Even those that are specialised in your area might not help you at all.
    - Even those who want to help often can't find out enough to get you to someone that helps.
    - Even those with a real interest on the cutting edge of research may be able to do no more than prescribe a painkiller and sign a form for you.
    - The human body is more complicated than any one person, or even group, can ever understand.

    But, that said, we went to great lengths to avoid quackery. At a residential weekend for sufferers, there was one true doctor who gave a short 10 minute presentation and then tried to escape before he got hounded for everyone's personal problems. 50% of the rest were salesmen trying to flog memory foam pillows and other junk to "help your condition". The other 50% were nothing more than charlatans (I shall never forget being in a Reiki healing class for moral support - against my will - and there being a ten-minute interlude between the instructor and a student where one "saw colours" with her eyes closed and then they discussed how insightful and "in-touch" with Reiki that made her while

  • by fuzzybunny (112938) on Monday November 26, 2012 @11:19AM (#42093983) Homepage Journal

    But think about it this way - a big part of the reason for sharing such information and making it commonly accessible is to enable the automation of pattern-finding.

    This is tough to do with patient records scattered through fifty thousand different hospital databases. With those 130,000 cases online, you're going to start seeing commonalities in various reactions to treatments, statistics, etc. which in turn will make it much easier for researchers to begin understanding what combinations of cures/treatments may or may not work - leaving the "weird" ones that don't fit into any patterns to the Jimmy Lins.

No amount of careful planning will ever replace dumb luck.

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