
My open source cure for brain cancer - evo_9
http://www.cnn.com/2012/11/25/opinion/iaconesi-cure-open-source/index.html?hpt=hp_c2
======
robbiep
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

~~~
noibl
> 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...](http://www.washington.edu/news/2011/04/04/high-dose-of-oxygen-
enhances-natural-cancer-treatment/)

~~~
meric
I wouldn't be so quick to dismiss foundational principles of TCM as 'generally
bullshit'.
[http://en.wikipedia.org/wiki/Acupuncture#Effectiveness_resea...](http://en.wikipedia.org/wiki/Acupuncture#Effectiveness_research)

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.

~~~
lobster_johnson
One must keep in mind that while acupunture works (for some things), it is not
for the reasons stated by traditional practitioners, which are not scientific.
Humans don't have "qi" or energy blockages or chakras or any of the (frankly)
bullshit inventions of Chinese and Asian medicine.

A lot of traditional medicine works (and a lot made-up, superstitious nonsense
does not), but it's invariably something that works with no underlying
understanding.

To paraphrase Tim Minchin (I believe), alternative medicine that works is
called "medicine".

~~~
meric
You have this picture of chinese medicine as doing voodoo activities such as
the belief of taking certain herbs will cure diseases.

While that may be part of chinese medicine it is not all of it.

For example, when you break your arm, there are traditional chinese medicine
techniques that work on the same principles of putting a cast on your arm.

Of course, now that we're in the 21st century, 2000 year old techniques for
healing a broken arm may not be as effective, but it is wrong to simply
declare all of chinese medicine to be "something that works with no underlying
understanding".

~~~
yen223
Chinese medicine doesn't even have a concept of microorganisms, or cells --
things which we now know are pretty fundamental to knowing how a human body
works.

When you say it is wrong to simply declare all of Chinese medicine to be
"something that works with no underlying understanding", you are correct --
that statement implies that Chinese medicine works.

------
DanBC
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.

------
unimpressive
"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.

~~~
sami36
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.

~~~
DanBC
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.)

~~~
bugsbunnyak
<http://en.wikipedia.org/wiki/DICOM>

Essentially all modern medical scanners export data in this format.

This fantastic site will let you view (after upload) DICOM images in a web
browser:

<http://slicedrop.com/>

There are a number of accessible (ie not clinical radiology priced) viewers
available, the best of the lot for general use being Osirix [1] (OS X only),
and ClearCanvas [2] (Windows only). Ginkgo CADx [3] and Mint viewer [4] are
also good, and both cross-platform.

There are several well-regard open-source libraries for DICOM: gdcm [5] and
DCMTK [6]. Widely used open-source medical image visualization SDKs with DICOM
support include MITK [7] and 3D Slicer [8] (the afore-mentioned ClearCanvas is
also an SDK in some sense).

[edit: formatting and add link]

1\. <http://en.wikipedia.org/wiki/OsiriX>

2\. <http://www.clearcanvas.ca/dnn/>

3\. <http://ginkgo-cadx.com/en/>

4\. <http://www.mint-medical.de/>

5\. <http://en.wikipedia.org/wiki/GDCM>

6\. <http://dicom.offis.de/dcmtk.php.en>

7\. <http://www.mitk.org/>

8\. <http://www.slicer.org>

------
biot
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.

------
lobster_johnson
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.

------
kenjackson
_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.

------
DanBC
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
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.

------
geekam
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
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.

