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.
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.
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".
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.)
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.
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.
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.
Grammar problems! Definitely not someone I want to have working on me if you are truly a med school student.
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."