My open source cure for brain cancer
cnn.com
cnn.com
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
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...
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
"better than placebo" being enough to register a drug, cherry-picking patients in the results, targetting very niche patient groups, not publishing any of the failed studies but being able to register on a SINGLE successful trial (which could be pure luck, statistically speaking)... and the fact that nobody ever repeats the trials for confirmation.
Traditional Chinese Medicine may be bullshit, but I think we have a heavy luggage of bullshit in modern Western Medicine as well and we ought to recognize it.
Disclaimer: I have a long track record in pharma industries.
Of course there is the points you bring up; I had also heard (but can't find any link from a bit of a cursory look around the net) that all subsequent trials of antidepressants show decreased treatment effect until you end up with meta-analyses that seem to show that they are no better than placebo, leading (jokingly) to Doctors, on the release of a new anti-depressant, saying 'Quick, let's use it before it stops working'
Part of the problem I think is the model of the pharma industry (I have no suggestions on where to start to change this!), part is that students/researchers don't want to give up on publication and years of work with null results and so change the aims or methodology, or rig their study... Which is morally indefensible but understandable at the same time..
I think a lot of people involved with medicine are under no illusions as to the limitations of our current methods. However one of the beautiful things about the scientific method is that we are continually testing our preconceived ideas, and trying to tease out if the effects are real or some artefact of bias, statistics, population dynamics, etc.
When I started Med School they tell us that 'Within 4 years, 50% of what you have learnt will be wrong and replaced. The difficulty is which 50%'.
THAT is how quickly our knowledge is growing, and goes a long way to show that the people involved in the delivery of healthcare don't take this all for granted.
The benefit of Western Medicine is that we know these terrible things and can work around them. They are not the system working as should be practiced. Using a fictional modality to treat patients is not a preferable alternative. Reform, not revolution.
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.
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".
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".
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.
These things more or less exist, you just don't feel them unless you actively develop the ability. It's relatively easy though, you can get a pretty good taste just during a 10 day vipassana retreat. That's not to say anything about the validity of the various metaphysical explanations of energy phenomena, but I don't think there's any question that the phenomena themselves are real at least on some level.
Firsthand experience. Saying it's quackery is like saying that colors are superstition and quackery because you can't prove their existence. Anyone (or certainly the vast majority of people) can experience these phenomena, if you haven't yet then it shows lack of intellectual curiosity and initiative.
As it stands though scientists are currently working on cataloging the various states from traditional buddhist literature and then cross referencing those with various other traditions and teachers. This should be done in another couple years, and once that's done this will enable more and better quality research into what people actually experience while meditating or doing yoga.
Everyone I talked to at the meditation retreat I did had the same sorts of experiences though, so I don't think there is really much doubt about what further research will find.
Firsthand experience from meditation is only evidence that using your attention in certain ways has various effects on the brain, it says nothing about the existence of chakras, qi, energy fields, auras, or the existence of deities or supernatural entities you were concentrating on.
As long as you're willing to accept that step 2 is "and then a miracle occurs."
"Firsthand experience from meditation is only evidence that using your attention in certain ways has various effects on the brain, it says nothing about the existence of chakras, qi, energy fields, auras, or the existence of deities or supernatural entities you were concentrating on."
Chakras, qi, energy, etc. are just names for phenomena you can experience. These phenomena may or may not be supernatural, but there is not necessarily anything supernatural needed for them to exist.
The experiential is a real thing, but it does not necessarily have any greater meaning or value. "Energy" is felt, but that does not mean that it is any more valuable to healing than the hallucinations of a drug, or ecstatic religious experience.
To give an example: Treating stress by teaching a person meditation is a rational course of action because we know that meditation affects neurological processes in the brain. Teaching meditation by saying (I'm making this up) it unclogs ghosts in your energy field is quackery because it offers a nonsensical explanation as well as hinges on metaphysical phenomena that cannot be tested nor disproven because the terms (ghosts, energy field) involved are not physical.
No argument there.
I do. How do you know you don't?
There is no evidence that the things I listed exist, and there are much simpler, scientific explanations why acupuncture relieves pain and discomfort than reasons offered by Chinese medicine. (Acupuncture has not proven consistently effective for much else.) With simple explanations, Occam's razor implies we can rule out the more convoluted explanations.
Equally importantly, the phenomena I listed have no rational, scientific basis. They are superstitions, or at best philoshopical abstractions irrelevant except as historical curiosities. If you could formulate a testable hypothesis I would be happy to discuss their validity, but unfortunately their existence are predicated entirely upon faith.
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.
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.
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).
You read the sources they're citing. Which is exactly the same way you evaluate whether or not a doctor knows what they're talking about.
"What kind of reputation system to build on this ?"
Does it really matter? Either their sources pan out or they don't.
"How do you deal with responsibility in case something very wrong occurs?"
The responsibility is all on you, the same as if you decide to do something a normal doctor recommends.
I am not sure if you know, but Health Care Professionals do share some part of responsibilities. When a treatment goes wrong, if you can prove that their choice was made on shaky assumptions or doubtful logic, they can legally be sued and asked for reparations.
> You read the sources they're citing.
For sure you have never looked at the clinical trial sources to reply in such a simple way. Have you ever read a clinical trial report? There is no way of telling that the results were not rigged, that it was not pure luck (as failed studies are generally not published) and that the results are applicable to your case.
It may be easy to do in other fields, but in medicine there is no such thing as full data transparency.
While doctors can and should be forced to compensate victims if they fuck up, the issue of how compensation works is only loosely related to the issue of fault. E.g. if a doctor leaves a pair of scissors in you then you're not at fault at all, but if a doctor tells you to take some drug and you don't look up the interactions and end up killing yourself then both you and the doctor are equally at fault, though you may still get a similar compensation in both cases.
"Have you ever read a clinical trial report? There is no way of telling that the results were not rigged, that it was not pure luck (as failed studies are generally not published) and that the results are applicable to your case."
While this is true, doctors have all the same problems; that is, the information they're going on is just as bad.
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)
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.
He doesn't need you to point out what has merits and what should be given airtime.
His approach is designed to determine what will work, based on evidence.
He should be entitled to include absolutely anything he chooses as something that may have the slimmest possible hope of being in some way beneficial.
If his open-source approach is valid, anything that is ineffective will be shown to be so.
there is no filter or adjustment in place to take treatment suggestions and approximate a 'better treatment'
The whole open-source process is the filter.
The point is that his process, if it works, will find a far better outcome than a dogmatic approach represented by such a sentiment as "anyone with a half rational brain should be alarmed by this statement".
You took my first comment out of context, again, but oh well.
He should be entitled to include absolutely anything he chooses as something that may have the slimmest possible hope of being in some way beneficial.
I am not in anyway disagreeing with this, and indeed supported it in my above post.
The whole open-source process is the filter. - No, there is no filter. There is just a blog site. On which anyone may post their views and experiences, which may be observations of n=1, or n=10,000. And there is a big difference. And no way of knowing.
Maybe the process will change, and so my first post serves to illustrate a weakness in the current design
if it works, will find a far better outcome than a dogmatic approach represented by such a sentiment as "anyone with a half rational brain should be alarmed by this statement".
So why don't you just come out and say that you are an apologist for CAM, instead of trying to pick off other points of my argument?
You are not interested in my criticism of his process, or my suggestions or comparisons about how the art of medicine is not necessarily a process that is open to engagement from everyone (and there are some very good points further down critiquing my justification of this)
You say earlier I'm not here to debate the efficacy of TCM or homeopathy, that's a waste of everyone's time. But that is what you are effectively doing, as it is becoming obvious you are not concerned with my actual commentary or engaging in meaningful debate, but rather my dismissal of the use of alternative medicine. And it is a valid technique of open discussion to dismiss that which is invalid
- another comparison - an open source project is only open to people who know or will do the hard work to learn the language it is written in - The same applies to the imperfectly developed concept of open source medicine: You have to speak the language to be able to contribute. If you dont speak the language (read: pseudoscience) it is not that you can't contribute, but your contributions are noise.
Look, that's a really disgraceful comment, for reasons you're probably not able to know.
I'm not engaging with your arguments because they do all come down to one's pre-conceived position on CAM. It's a religious/identity argument, and, yes, a waste of time.
BTW...
Fair point - I did cherry pick something out of context, mistakenly. Your comments are very long and I was skimming.
But I think my point holds: it's not for you to judge what should be in or out.
Your notion of what should be allowable is governed by your apparently binary classification of modalities as being either science-based or alternative.
My point is that your judgement on this is not required: the open source process should provide the evidence.
This may or may not turn out to be true, but either way it will be interesting. Can't we wait to see the results?
I do not think that treatments are either binary Alt-med or science-based; rather there is a spectrum; I didn't make this explicitly clear however left the door open to this when I said I support lifestyle treatments.
I agree that the evidence should speak for itself but as I point out in another post part of the problem with CAM is that you are dealing with 'true believers' - people that will deny the research that has been done and claim that none has. The truth is a huge body of CAM has been looked at, and tested scientifically; most of it has been found to be wanting; some has been found to be useful, and is now 'medicine', some of it has still not been looked at.
So in this sense when I say something to the effect that 'this treatment is not good and may kill people who would likely be better treated by a different method' what I am implying is that the treatment has been shown to have no effect, and thus is already invalid.
Should I wait for other people to decide? I don't know. I am opinionated and a passionate advocate of better healthcare and increased scientific awareness. Sometimes I express my points of view.
Should all the evidence be available on all treatments - like, for example, on this blog/Cure page? Yes. But what this site is, in it's current incantation, going to lead to is impassioned descriptions of treatments based on belief, and not evidence.
Additionally, and again, I make the point that if someone is, for example, undertaking Traditional Chinese Medicine and 'Homeopathic Chemotherapy', whilst at the same time undergoing conventional therapy - Chemo and Surgery +- Radio, and the treatments are successful, the person involved is as likely as not to ascribe the success of their treatment to the alternative treatments than the conventional, evidence backed treatments.
Which gives the alternative treatments backdoor legitimacy, whilst having no efficacy of their own, and distorts the perceptions of those newly diagnosed that are desperately seeking help and answers.
So i am interested to see where this goes, how 'open source medicine' turns out and how it's put together; I don't think doctors should have a monopoly on medical knowledge; or feel that the only legitimate advice comes from the devotees of the cult of medicine (as it is often made out to be), However I will not be quiet about the dangers posed by unfettered access to 'folk' remedies and recommendations based on a n=1 sample size, or 'cousin's uncle's sister's gardner' type treatment recommendations.
It's this kind of nuance that I want to see - and the lack of it that triggered my first response.
Should I wait for other people to decide? I don't know. I am opinionated and a passionate advocate of better healthcare and increased scientific awareness. Sometimes I express my points of view.
Yes, and you possibly overestimate just how much can be known with certainty, given how much complexity exists in the natural world, and how little of it is (or can be) understood.
Without meaning to sound like a complete tosser, I try to adopt a Socratic position on matters of science, particularly medicine: all that we can really know is that we know little.
Sure, we can think we know things based on evidence, but we cannot fully know the limits of that evidence, or what new evidence may be discovered to disprove what we thought was proven by earlier evidence. Really, the history of science is replacing old evidence with new evidence.
This is why I think this project is such an interesting exercise, and why react so strongly to the idea of dogmatically ruling anything out.
Ignoring the not-slim possibilities of serious harm from side-effects? (Not to mention interactions with other treatments, making them less effective or more harmful.)
I apologise if that was not clear.
I am not dogmatically advocating that the only people that can be involved and making decisions are doctors, or that we should only listen to conventional therapy recommendations, or that all other therapists press-ganged into agreeing with the convening doctors.
But the contributions of alternative practitioners (the bit I believe you have issue with) needs to be evaluated with regard to its effectiveness.
Not specifically - it's the dismissal based on pre-conceived prejudices, anything that could potentially lead to interesting new discoveries or lessons.
needs to be evaluated with regard to its effectiveness.
Yes, indeed.
If you'd said that from the start instead of "anyone with a half rational brain should be alarmed by this statement", we wouldn't have a problem.
Yes, everything.
Did you not see the bit where he talked about having a whole lot of conventional doctors involved, and having practitioners from every discipline be made aware of the recommendations that each other were making?
MARMAP - multi agency risk management & assessment panel is a group of the people involved in the care and treatment of a vulnerable person who is at high risk of harming themselves or other people.
Let's make a hypothetical patient, and call him Bob.
Bob has a GP. Bob has a care coordinator. Bob has a consultant psychiatrist for outpatient care. Bob has a consultant psychiatrist for inpatient mental health hospital care. Bob has a community treatment team. Bob has a community psychotherapist. Bob has a crisis team.
This is about ten people just for the mental health stuff. I can tell you now that these people do not agree about the best way forward for Bob. Even though they're all in the same room as Bob, and they all get minutes of the meetings, one doctor will call Bob non-compliant when Bob follows the conflicting advice of another doctor. (EG: The in-patient consultant tells Bob to avoid going to hospital. The out-patient team admits Bob, against his will. Bob is called manipulative by the in-patient doctor.)
This is a lousy situation. Even though clinicians are talking face to face with each other communication gets garbled. Imagine the problem when communication goes from a nurse observing Bob to one doctor, through their juniors, to a secretary, to another team (sometimes using weird technology such as fax machines) through to a team leader, to a team member. ("Interface Problems") And this is within the same organisation. Moving data from the MH trust to a different medical trust is tricky, and to social services or law enforcement is even trickier.
Getting more people involved causes problems, and that's when the people are in the same specialism and broadly agree on modes of treatment. Getting more people involved when those people have fundamentally different opinions about treatment is going to distract them from providing good treatment as they focus on debunking stuff that's useless but has vigorous advocates.
The approach described in this post is an attempt to find a method of delivering better health outcomes than current mainstream health systems (in addition to being one man's attempt to save his own life using whatever means available).
Say all you want about how superior the conventional health system is: people keep dying of cancer, at increasing rates in come cases.
This open-source approach may or may not yield better outcomes.
Either way, won't it be interesting to see?
Can't we wait to see some results before condemning it simply because acupuncture was allowed?
I haven't said the conventional system is better. I've used to flaws of the existing conventional system to point out the flaws of the proposed system.
> This open-source approach may or may not yield better outcomes.
How will we know? Seriously, how can we tell? There's no rigour to this. It's just idle self-indulgent noodling. That's fine, it's his life and body and he can do what he likes with it, but don't pretend it's useful when there's no possible way of it actually being any use.
> Either way, won't it be interesting to see?
I doubt it. But I'm happy to be wrong. Please, what could be some interesting things to come from this?
> Can't we wait to see some results before condemning it simply because acupuncture was allowed?
Again, that's not why I'm condemning it.
Seriously man. It's a lot of people and enough doctors working together to achieve something. Things like:
- He is cured of cancer
- Other people are cured of cancer
- New things are learned about how to treat cancer more effectively
... and probably other things that can't be predicted, but which could possibly turn out to be far more valuable.
That's the point to remember about innovation - which I consider this to be; you can't predict where things may lead, and often what you discover is different to what you expected.
But to me that's why this is interesting; I've long thought that there could be place for the processes we see in open-source projects (as well as startup companies) in medicine.
And without the proper rigor, this can not be possible to determine. That he has no cancer can more easily be determined, but the whys and hows may have nothing to do with his process.
Grammar problems! Definitely not someone I want to have working on me if you are truly a med school student.
This kind of negative feedback loop is not a bad thing.
What seems like a poor decision to us may make them perfectly happy until they die in a way that's consistent with their (incorrect-to-us) beliefs.
The best we can do is to make information available, to debunk scams and de-incentivize scamming, and to continue to learn more about human cognitive biases.
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."
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.
> 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.
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.
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.
While it wasn't hard for me, most would've been stuck without access to their own data.
(And even word processors have problems when trying to open some obsolete format.)
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:
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/
4. http://www.mint-medical.de/
5. http://en.wikipedia.org/wiki/GDCM
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.
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.
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.
AFAIK, they are still a bit in the early stages but you might want to keep an eye on them.
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.