My open source cure for brain cancer

http://www.cnn.com/2012/11/25/opinion/iaconesi-cure-open-source/index.html?hpt=hp_c2

by evo_9 • 14 years ago

70 75 14 years ago

robbiep8• 14 years ago

Both inspiring and a little worrying.

I agree that democratisation of medicine is a helpful process and think that it is great that sufferers of diseases have good forums for discourse, sharing ideas and, most of all, support, because cancer can be a lonely diagnosis.

But.

To a certain extent medical knowledge, and knowledge of treatments, can be no more democratised than the design of an expert system, or a complex back end to a large system.

Why?

You still need experts in the area and people with no training are going to have a limited contribution.

At the same time, there is the problem of which paradigm the patient is going to be treated in. In the same way as a project manager may decide 'we are going to use Python, C++, running on a xyz backend' or some such, the treatment needs to be based in MEDICINE. not that nutritionists, physiotherapists or speech pathologists don't have a word in - they are part of the multidisciplinary team that is part of the medical treatment team, but a decision needs to be made that you are practicing MEDICINE to treat this patient, not pseudomedicine. Using Pseudomedicine would be like having a coder for your IT project that only knows pseudocode.

From 'the cure' website:

The dietary strategies, the changes in lifestyle, the homeopatic oncology, the traditional chinese medicine and the many energies which you all have given me have all had the best of results.

Anyone with a half rational brain should be alarmed by this statement.

It is not that lifestyle changes are bad; they are good - they help a patient adapt to their new situation. But Traditional Chinese Medicine and Homeopathic Oncology are not treatments; they operate under fraudulent principles - they are, at best, Lifestyle interventions that claim to operate by exerting theraputic effects.

And so, the democratisation of medicine, which is empowering for patients, and a good thing, creates distortions in the marketplace, as the uninformed but impressionable patients make treatment decisions based on emotional appeals about 'holistic therapies' that are less toxic - but also, and what is swept under the carpet, less effective.

Disclosure: Final year medical student

tomhoward10• 14 years ago

Anyone with a half rational brain should be alarmed by this statement.

I'm much more alarmed by that statement.

I'm not here to debate the efficacy of TCM or homeopathy, that's a waste of everyone's time.

But the guy has clearly done a huge amount of research and drawn on whatever expertise he could determine might contribute to his quest to save his life, and he deserves better than this kind of middlebrow dismissal. (See http://news.ycombinator.com/item?id=4692794)

jsaxton86• 14 years ago

To be fair to the original poster, you didn't post his entire statement. If you look at the entire statement, he made several intelligent points about TCM, any one of which could have been the starting point for an intelligent conversation if you disagreed with what he had to say. Lots of comments on HN could be considered a "middlebrow dismissal," but this is not one of them.

On another note, the original statement in question kind of reminds me of a Steve Jobs quote:

"I really didn't want them to open up my body, so I tried to see if a few other things would work."

robbiep8• 14 years ago

My point is that this man is searching for a cure. His form of cure is a beautiful, inclusive, democratic thing (I mean that with no sarcasm) including art, doctors, other patients, support from other run of the mill humans, and the treatment opinions and recommendations of people that are formally or informally trained in treatments that are not scientifically valid.

Your suggestion that I am undertaking 'middlebrow dismissal' of this man's work and passion misses the point of my post entirely. Which I will reiterate for you, is not that I disagree with this man's idea, or the general principle, but that there is no filter or adjustment in place to take treatment suggestions and approximate a 'better treatment'

A deeper point you raise is, does every point of view have merits, and should it be given the same airtime as all other views. This is particularly important when someone's views begin attracting a lot of attention: The good, or valid, ideas should be supported, and the invalid suggestions should be weeded out by discourse.

I believe that any patient has the rights to make their own treatment choices, and they should not be judged as a result of those choices (Unless they are a parent deciding for an incompetent child, however there are many legal cases that establish when this should be possible)

But this patient is influential; what he says will influence other patients with his condition; I have 2 issues here:

1) It breeds 'back door' legitimacy for fraudulent treatments

2) Some alternative-inclined patients may choose to opt solely for those treatments, which will kill them.

So this error with his model should be pointed out, that a more perfect use of modern communications technologies can be used to enhance the patient's quality of life and treatment.

cmccabe• 14 years ago

Doing research is no guarantee that you'll come to the correct conclusion. For thousands of years, people treated serious illnesses with leeches, bloodletting, branding, ingestion of liquid mercury, and so forth. These treatments did not do any good, and in fact they did harm. If people stop being skeptical and calling out bullshit for what it is, then those days will return. The mainstream media have been very irresponsible in this regard, reporting on a lot of highly questionable studies on small numbers of people as if they were incontrovertible truth.

underdown• 14 years ago

my sister is dying due to glioblastoma malforme and watching her "treatment" (cyberknife/avastin/invasive surgery) for the disease provided by top tier US medicine (barrows mainly) leaves me with the marked impression she would be better off seeking alternative therapies. I'm as skeptical a human being as you are likely to find on this planet and I am no champion of pseudo medicine - some ailments however may be treated more effectively via the placebo effect if nothing else. GBM with its ~95% mortality rate over a 2 year period is likely one of them. So while I agree with your overall sentiment there are plenty of edge cases where "medicine" is anything but.

robbiep8• 14 years ago

My heartfelt condolences. I had a cousin my age with GBM, and have been involved extensively with a Neurosurgeon in the surgical resection of GBM tumours. It is truly one of the worst conditions there are.

The essence of what you are getting at, I think, is whether we should treat some cases at all. This is a problem I have considered many times watching my Surgeon interact with GBM patients.

I think it comes down to 2 measures: Does the patient desire quantity of life, or quality of life? And what trade-offs would a patient be willing to accept in order to achieve quantity of life? Would it be okay for them to be a hemiplaegic? Paralysed? Unable to speak? Blind? For some patients this is okay as they may see their children reach some meaningful milestone, or be able to go and do that 1 thing they have always wanted to do.

This is a horrible tradeoff that no medical practitioner can offer any advice on, it is a deeply personal choice. My thoughts go out to you and your family.

noibl• 14 years ago

> But Traditional Chinese Medicine and Homeopathic Oncology are not treatments; they operate under fraudulent principles - they are, at best, Lifestyle interventions

The foundational principles of traditional medicine (Chinese, Ayurvedic, whatever) are generally bullshit. But that doesn't mean that everything that emerges from them should be ignored. If researchers have the resources and inclination to engage with specific claims and put them to the test, surprising discoveries can still result in this day and age.[1] Of course, that doesn't mean that discussion of any one patient's treatment should always be surrounded by a haze of quackery. But we shouldn't close the door completely. We should be careful to distinguish the fanciful principles of traditional therapies from their observed benefits over centuries and from the actually fraudulent nature of later pseudomedicine such as homeopathy.

[1] http://www.washington.edu/news/2011/04/04/high-dose-of-oxyge...

robbiep8• 14 years ago

I agree completely.

Part of the problem remains however that so many treatments have been studied and proven wrong, however proponents of treatment by 'Insert CAM modality here' remain willfully blind to the evidence against their treatment, and still tell everyone that will listen that not only does it work, but modern medicine won't test it and the studies aren't done.

as evidence I proffer the more than $1 Bn spent by the NCCAM for research into CAM that has largely come up bunk on the big issues.

The research should be done, it is important to approach it with an open mind, but CAM proponents must live up to their end of the bargain and stop moving the goalposts whenever a study that debunks a modality is released.

ps. I'm not too sure what your link has to do with the discussion exactly - I mean, artemisinin is not exactly part of the CAM stable anymore, it's a well accepted part of 'medicine proper' these days - joining a long list of other traditional therapies, asprin first and foremost amongst them, that have followed that route

meric2• 14 years ago

I wouldn't be so quick to dismiss foundational principles of TCM as 'generally bullshit'. http://en.wikipedia.org/wiki/Acupuncture#Effectiveness_resea...

It's more like - the foundations of TCM hold but over time knowledge passed down has accrued a lot of junk.

I wouldn't use TCM to treat cancer.

If you look at http://en.wikipedia.org/wiki/Chinese_food_therapy a lot of it doesn't make sense.

I still believe the principle is sound however; Eat lots of fried foods and drink not enough water and you can expect to get mouth ulcers.

illuminate7• 14 years ago

"The foundational principles of traditional medicine (Chinese, Ayurvedic, whatever) are generally bullshit. But that doesn't mean that everything that emerges from them should be ignored"

Those items are medicine, not alt-med or holistic medicine or TCM or naturopathy.

The problem is that this wheat will nearly never be separated from the chaff. It's possible for that to happen, as Osteopathy came from similar origins as Chiropractic, but not very common these days. There is little business and ethical interest in rejoining "alt-med" into science-based medicine.

hooande• 14 years ago

Yes and no. Curing cancer is going to take more than "traditional chinese medicine and the many energies". But it's not written that it's going to require 4 years of college and 4 more years of medical school. You do still need experts, but there's no theoretical limit to the contribution from people without formal training.

People can develop an incredibly deep level of knowledge about a narrow topic of interest to them (ie, life threatening illness). The internet is a thing now...people can can learn and share a remarkable amount of information. Even new purely academic research is made public after a few months.

The idea of "open source cancer treatment" is a very promising one. This v. 0.1 may not be the best. But if this is like any other new idea or technology, in 5-10 years we could be seeing the most valuable product of crowdsourcing.

ekianjo4• 14 years ago

The idea of having medical "experts" is that they have credentials you can rely on. How can you tell if someone is a self-taught expert or a quack ? What kind of reputation system to build on this ? How do you deal with responsibility in case something very wrong occurs?

I think it is an interesting direction, but I would rather be in favor of large-scale statistical models on all treatments taken by patients with similar profiles/conditions if all medical records could be made available (anonymously).

wissler• 14 years ago

Heaven forbid that someone retain some individual control over their own medical choices. On the contrary, we need High Priests of Medicine to lord over us, to dictate to us what treatments we may and may not have access to.

genuine2• 14 years ago

> Anyone with a half rational brain should be alarmed by this statement.

> It is not that lifestyle changes are bad; they are good - they help a patient adapt to their new situation. But Traditional Chinese Medicine and Homeopathic Oncology are not treatments; they operate under fraudulent principles - they are, at best, Lifestyle interventions that claim to operate by exerting theraputic effects.

The placebo effect is huge, my friend, and AMA-approved medicine is not exempt from it. You do realize that the last four gruelling years of your life, and those years ahead, will make you believe that you can cure people right? And that belief is also held by most patients. So, even if you screw up or in fact have no idea what you are really doing, you get the benefit of the placebo effect in almost every patient that believes that you will cure them.

You are as much a witch doctor as the holistic practitioners. It is likely that in 100 years, doctors will say that the medicine that you are practicing now was incredibly misinformed- no, not because you didn't believe in "some kooks", but because of everything that is continuously just wrong because we don't have all of the answers.

BTW- are you really a med school student? You misspelled therapeutic.

unimpressive• 14 years ago

"I had no direct access to my own information, since I use Linux and OSX rather than the files' Windows-based viewer. As a software engineer, I found software and programming tools to hack the files and make them open -- but a nontechnical person would have difficulty making use of their own medical data."

A lot of people make a big deal out of the damage done by proprietary code you can't see. I think more damage is done by proprietary formats you can't read. Compounding this problem is the dismal understanding of most users about what their information even is. (See: People attributing impossible properties to malware.) So any hope of users liberating their data is greatly diminished.

sami362• 14 years ago

Regardless of your stand on OSS & proprietary software, most of the world runs on Windows. The idea that reading a doc file required "..programming tools to hack the files and make them open...." is hyperbole. If you have enough tech skills to install linux, you sure know how to find a way to read docx files. To most people, reading an open doc format would actually represent more of a challenge.

DanBC6• 14 years ago

He's not talking about word processor files, but about data from other stuff. How do people open XRays or MRI scans or etc etc?

(And even word processors have problems when trying to open some obsolete format.)

daeken• 14 years ago

I had an MRI done a while back and got a DVD of the data. It came with a proprietary viewer, but some tinkering got me raw image files I was able to deal with. I released it all at http://demoseen.com/mri mainly for my own enjoyment.

While it wasn't hard for me, most would've been stuck without access to their own data.

DanBC6• 14 years ago

So, he's invited many people to look at his medical information and to provide treatment suggestions.

He then has to assess the advice he's given, and decide on a treatment option.

What his approach has done is remove the filter that a good[1] doctor should be providing.

People say "Hey, my aunt had cancer. She tried homeopathy, and it totally worked!" but they don't mention what type of cancer it was, and if any other treatment had been involved at the same time. And you tend not to hear the "Hey, my aunt had cancer. She tried homeopathy. She's dead now, of course." stories.[2]

And now he has a mix of stuff which might be working, with stuff that's not doing anything (not doing any harm, but costing money, and needing transport and the risks of car travel) such as homeopathy. And if he is cured? What gets the credit? The total mix? Or the actual medicine?

Reading research studies is for most people tricky. They don't know much about sample sizes or how to tell if blinding is adequate or if the control is any good or if the result is statistically significant. Most people have awful understanding of statistics. (What does a 50% increase in risk mean? Most people would be horrified if told that something increases risk by 50%, but they don't stop and think about population sizes.)

So why didn't he just learn some better questions to ask his doctor?

"What happens if I do nothing?" is a great question. "Imagine 10,000 people going through this surgery; how many die? how many aren't 'cured'? how many have significant complications?" are other good questions. "What other options are there, and why are you not considering those?"

I haven't read it yet, but "Testing Treatments" is supposed to be a good book about this kind of stuff.

[1] Not all doctors are good. Some are awful.

[2] "Dad always thought laughter was the best medicine, which I guess is why several of us died of tuberculosis." - Deep Thoughts by Jack Handey.

DanBC6• 14 years ago

I'd be happy to open up my medical notes to medical researchers, but there's no easy way to do this in England.

I'd want some kind of protections.

I'd want researchers to pre-announce any research they were going to do, and then publish the research they do. This is to avoid null-responses being filed away.

I'd want any research being done with my data to be published freely.

There'd have to be some kind of suitable anonymization. Yes, I understand that's difficult.

a_bonobo• 14 years ago

You'd like the weconsent-guys (led by John Wilbanks) which tries to fulfill all of the given aims by a) being a central repo for medical data and b) introducing the required legal paperwork (for example, a license or contract which prohibits to identify anonymous participants based on their data)

http://weconsent.us/

AFAIK, they are still a bit in the early stages but you might want to keep an eye on them.

biot• 14 years ago

Unfortunately this approach doesn't scale. The reason he had 90 doctors and researchers looking at his case is likely due to the novelty of someone putting all their information online. As soon as you have a not insignificant number of people doing this, good luck even getting one doctor to notice your case and volunteer their time.

geekam• 14 years ago

My grandmother has been diagnosed with pancreatic cancer and this video further confuses me. The reason that I want her to get better and do not know what will work and what won't scares me. For example, some say that she is really old to take chemotherapy and then some say that traditional medicine is bullshit. Not sure where to look anymore.

markkat• 14 years ago

Sorry to hear that. Pancreatic is very difficult. I work in cancer research, and have other experience. Get multiple opinions, and find a doctor you like. If she doesn't qualify for surgery, or radiation, chemo may be the only option with data to support it. You might look into ruxolitinib, a drug recently approved for myelofibrosis, but in trials for pancreatic cancer. Best of luck.

illuminate7• 14 years ago

"some say that she is really old to take chemotherapy and then some say that traditional medicine is bullshit"

Regardless of the conclusion (seeing as I'm not a medical professional, and even if I was, remote diagnosis is dangerous in itself) it's not impossible for them to both be correct.

kenjackson• 14 years ago

I had no direct access to my own information, since I use Linux and OSX rather than the files' Windows-based viewer. As a software engineer, I found software and programming tools to hack the files and make them open -- but a nontechnical person would have difficulty making use of their own medical data.

What does he think a non-technical person would do with an open source format? Being open source doesn't fundamentally change things in the sense that it's not like my grandmom is going to say, "Ahh... this is file format IEEE-12312. Let me write a quick viewer optimized for my concerns."

I suspect the author thinks there would be a rich ecosystem of tools for an open source file format, but in something as specialized as medical records I don't think the non-technical user would do much better. Viewing your vaccination history is much different than identifying sepsis vs trying to diagnose MS in the brain vs cancer vs high blood pressure. You need to have some degree of medical expertise to even know what to begin looking at and what tools are providing useful data.

With that said I'm not opposed to open source file formats. But I just think it doesn't dramatically change the equation -- at least not today.

lobster_johnson6• 14 years ago

As far as I can see, this guy is going for the Steve Jobs solution -- trying to fix himself with folk medicine.

We know what happened with Jobs: He relented and went into surgery after about a year, when the diet stuff had failed to curb the progression of the cancer. There is a pretty good chance Jobs would have been alive today if he had not gone the alternative route, as his type of pancreatic cancer was of a particular kind that usually gives much better survival rates.

Sure, Jobs may have died in exactly the same way even with early surgery, but the defining characteristic of cancer is unchecked growth, which means that an early response is always better than a late response.

I like the open-source diagnostic idea, but I don't think he is making a rational choice in eschewing informed medical advice.

My open source cure for brain cancer

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