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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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  • There were a ton of people interested in his case, but imo that was strongly dependent on the novelty and the fact that it's uncommon so far. Why did these geneticists and researchers spend a bunch of unpaid time on his case in particular? Because it was one of the few (only?) available in this form. But every year there are about 13 million people diagnosed with cancer. What if even 1% of them were uploaded online? Would there be folks like Jimmy Lin looking through all 130,000 of those cases on a volunteer basis? My guess would be no: once it gets to be a few hundred or thousand people trying the same thing, and then it just goes back to being normal medicine again, of the kind where you need doctors who're doing it as a full-time job to go through all the cases.

    • by Half-pint HAL (718102) on Monday November 26, 2012 @08:32AM (#42093231)
      It's in part novelty, it's in part the cult of the individual. We've seen the internet pay for doctors bills, legal fees, new houses, breast implants etc for individuals, to the detriment of bigger charities that are far more efficient (and often more deserving) because people like an individual person with an individual story -- it's more personal. A genuine "cause" is far more abstract.
    • It also sounds like Sturgeon's law is having a field day among some of the contributors...

    • by bfandreas (603438)
      Getting a second opinion is far from novel. People do it all the time. The novelty is the scale in which he takes that second opinion thing.

      Will it help him?
      No, it won't. In fact it will get in the way.
      The problem is that he will get a lot of opinions with a lot of different treatments which will be mutually exclusive. Also he will get a lot of BS suggestions ranging from homeopathy, feng shui to praying. Quod capita tot census.

      The only surefire cure -in fact the only medical discipline that REALLY is
      • by BKX (5066)

        Not to be all grammar Nazi (prepare for incoming grammar and spelling mistakes), but I think you meant "QUOT CAPITA TOT SENSUS". When I looked at your version, it made no sense (That head many counts.). Then I thought about it. "One head, many opinions"

      • I agree with 99% of the above post, and also with the fact it's novelty alone that makes it standout (and that universal healthcare is better than spending the same amount on a single person however pathetic his story).

        Still, outside becoming famous Iaconesi got something he would never have reached without his initiative : he raised the attention of various, famous physicians.

        Basically, he's about to obtain a cure "à la Steve Jobs" without the money.

        Which is wise.

        For a single person.

        • by bfandreas (603438)
          The chance of those agreeing on anything is exactly zero. How do you pick one?
        • by Fjandr (66656)

          Basically, he's about to obtain a cure "à la Steve Jobs" without the money.

          Have a little optimism. He might live after all. </joke>

      • by tnk1 (899206)

        He probably has a better chance using this method. Assuming he can attract the right attention, of course.

        Yes, if all he gets are a bunch of stories, some life affirming notes, some neat-o brain surgery ideas and his tumor's DNA sequenced, then it's not going to do much good. If, on the other hand, he finds out about some procedure that is actually helping people that his current doctor's may not be aware of, then it will be worth it.

        Remember, your doctor is only as good as what he knows, and as good as h

    • by fuzzybunny (112938) on Monday November 26, 2012 @10:19AM (#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.

      • by Trepidity (597)

        That's true, and an interesting angle. Some of that does happen already: at university-affiliated research hospitals in particular, there is a trend towards digitizing this information and making it available to researchers (under various confidentiality agreements, and with Institutional Research Board approval), who do things like mine it for patterns. I know some people at U. Washington in St. Louis doing that kind of thing. But it's a good point that it might become more widespread if there were an open

  • Support =/= Cure (Score:5, Insightful)

    by Anonymous Coward on Monday November 26, 2012 @08:08AM (#42093087)

    "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."

    Cancer does not work that way.

  • Thank fuck! (Score:5, Funny)

    by gazbo (517111) on Monday November 26, 2012 @08:12AM (#42093107)
    Now we've got homeopaths and spiritualists involved, a cure for cancer must surely be just around the corner!!
  • Misguided (Score:5, Insightful)

    by Captain_Chaos (103843) on Monday November 26, 2012 @08:14AM (#42093125)

    'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers.'

    This is incredibly misguided, and that is the most charitable way of putting it. Other things you could call it are bloody stupid, daft and irresponsible. There is no way in hell you're going to be able to separate the wheat from the chaff with such a volume of random input, most of it crap, and come up with any useful ideas, let a lone a "cure". Especially not if you're apparently going to accept most of the crap. Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...

    • It does sound like a badly done odd-one-out list, doesn't it?

      "For 10 points, which of these are people who may actually be able to cure your cancer? Surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers."

    • Cut the guy some slack, he's just been diagnosed with cancer, quite frankly he's going to be scared shitless and clutching at every straw he can get his hands on. I'm not condoning his approach but I can certainly understand it. Really though he needs to grit his teeth and just get on with the treatment ASAP, It's not the dark ages.

      • Oh, I don't mind the guy doing this one bit. I mind web sites with a huge audience (slashdot and CNN) publishing this as anything but one desperate man's cry for help. I read this first on CNN, which described it as an open source "cure" for cancer. As if the one thing that's been missing in all the thousands of trials and billions of dollars spent trying to cure cancer was one man's complete medical record.

    • by openfrog (897716)

      This is incredibly misguided, and that is the most charitable way of putting it.

      There is no way in hell you're going to be able to separate the wheat from the chaff with such a volume of random input

      Oh really? So from your own point of view, there is no way in hell such a thing as Slashdot can work, all those random comments from idiots who can't even RTFA! Not mentioning such a ludicrous idea as an open encyclopedia where every other ignorant can edit an article.

      Yes, a lot of suggestions are going to come from homeopathy and spiritual healers. And you know, then, maybe these people will learn more in the process than if they were being outlawed and chased by lawyers.

      Iaconesi mentions the word 'harmony

      • So from your own point of view, there is no way in hell such a thing as Slashdot can work, all those random comments from idiots who can't even RTFA!

        Announcing that you are going to accept the contributions of homeopaths, etc. is like saying you're going to read Slashdot at -1 or accept every edit on Wikipedia.

        Yes, a lot of suggestions are going to come from homeopathy and spiritual healers. And you know, then, maybe these people will learn more in the process than if they were being outlawed and chased by

    • by rvw (755107)

      'We are creating a cure by uniting the contributions of surgeons, homeopaths, oncologists, Chinese doctors, nutritionists and spiritual healers.'

      Homeopaths? Chinese doctors? Spiritual healers? "Uniting their contributions" is going to drag the net worth of the resulting mess down to below zero...

      Reading your comment, it appeared to me that you rejected these alternative methods right away, but after reading it another time it's more about the "uniting" part. I have tried many alternative cures for my fatigue problems, like acupuncture, haptotherapy, ayurveda and more. I always try to find an explanation for things that work. I've tried Ayurveda, and although I have no idea what happened, it worked for me like nothing else. I didn't have to do anything, no herbs or pills, no difficult conversations,

  • The guy who actually has it is going to be so rich that he's living on his own private moonbase with a harem of Scarlett Jonannson clones.

    You are not going to get better by taking free advice from smelly hippies and Doctor Trollface.

  • Hallmark better patent this or it's going the way of the buggy whip.
  • My ex (Score:5, Interesting)

    by ledow (319597) on Monday November 26, 2012 @09:39AM (#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

    • 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.
      .
      And this guy in Italy has turned this around on its head and put all his medical records on line for all to see, hoping that the doctors will swarm to him and he can agglomerate all of that into "the cure" for himself. Whereas since he's acknowledging the homeopaths and spiritualists and quacks who've been responding to
  • It's all well and good that he received all these notes from thousands of well-wishers, but has he actually FOUND anything useful for his case? Awake brain surgery is neither particularly new nor innovative; it's been in use for years. It beggars belief that his current treatment team was unaware of the technique. And I don't think all the kooks trying to cure his cancer by nutrition, spiritual healing, yoga, homeopathy, "Chinese Medicine", etc., really have that much to contribute, cure-wise.

  • Zombies can cure cancer: they'll just as happily devour your brainz whether you have it or not. "You will be assimilated. Resistance is futile. Your distinctiveness will be added to our own."

  • I'd suggest he research rio virus to see if there is hope for use against his type of tumor. Unfortunately the links in the summary do not provide a place to add to the 200,000 responses so far. There IS a nifty little list/chart of key words which does not currently include Rio or Virus. OTOH outside of a clinical trial I don't know how one would deliver such virus in his case - it's not like you can have a kid with a cold spit on your brain ;-)
  • I'm sorry that people get cancer.

    Making this sort of medical data available to any researcher with an itch for free is useful.

    I also agree on the flip side better organizing online moderated and professionally reviewed resources to educate and provide legitimate advice and treatment options is also beneficial.

    At the same time encouraging others to follow this same path will only enrich crackpots and scam artists selling their cures and assorted bs which simply does not work.

    Even the better moderated cancer

  • I treat people with brain cancer for a living in a university hospital. As someone once said, 10 barbers won't make your haircut 10x faster. In the end, if his disease is bad, there is simply not much to be done today in order to obtain a cure. When I say "bad disease", I don't mean stage or grade or histology. I mean the specific population of cells with the specific DNA alterations that he has in his head. His best chance is probably in a clinical trial. Believing that we somehow, somewhere, have a cure

  • If you are science-minded and are interested in the history of cancer research and the state of the art, I can't recommend this book highly enough:

    http://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439170916 [amazon.com]

    I'm not a physician or a scientist, but I spent years on a team with both in a cancer research lab, and everything in the book is consistent with the science I have picked up along the way. It's also very readable. I give a copy to everyone I know who has to confront a cancer diagnosis.

  • There's a better way to crowdsource knowledge: markets. Create markets that let people bet on whether X is the thing that will cure this cancer, and whether it's curable at all. If enough people participate you'll get your best chances out of the soup.

What the world *really* needs is a good Automatic Bicycle Sharpener.

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