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Thread: Extended Wong comments

  1. #1
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    Extended Wong comments

    I found one set of extended comments... it was on Fix's site in a thread mamamax was on...

    http://www.fixscoliosis.com/forum/th...vs-rigid-Brace

    Wong wrote:

    Thanks for your email. This discussion has been brought up again and again.

    Our study team got more than 5 years of experience for using SpineCor from intensive training in St Justine Hospital (3 team members were granted with the training certificates) to real practice and then quitted the prescription. Our names not being listed in the relevant website recently is with an apparent reason.

    In our randomized controlled trial study, we followed the treatment protocol suggested by the inventor of SpineCor. Honestly speaking, our team did hope SpineCor works.... We published and shared our experience of using SpineCor with others but some "practitioners" might think our team did something wrong without further considering the actual mechanism of SpineCor and the patients' compliance and acceptance - it is not a fair, objective and unbiased comment. Definitely, we shared our own experience through publications and it does not mean every researcher / practitioner will have the same experience as ours. Anyway, I am looking forward to seeing new developments of SpineCor including more randomized controlled trial studies in particular from the independent bodies / institutions like our team.
    It seems someone is mistaken (or lying).

    I think there are more comments out there from Wong that I read but I can't prove it. I'll keep looking.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Please read the rest of the tread - regarding the Spinecor manufacturer's rebuttal to the controversy. If you read the six page rebuttal - Spinecor states that the 3 team members, while they had "certificates", these certificates were introductory level training certificates only - not certificates of full training which would deem them fully certified.


    Reading the six page rebuttal:

    The Wong study authors and facility where the patients were treated - were not qualified to a proficient standard in the Sinecor treatment system. Proficient standard means: qualified to treat patients unsupervised. That those involved were not qualified (to a proficient standard) begs many questions regarding quality care and ethics.

    The treatment center did not order enough brace components to effectively brace 22 patients nor did they order enough replacement components necessary to effectively maintain that amount of braces.

    The rebuttal breaks these two points down in great detail. Bottom line - There is no way this study could have been successful with unqualified providers and less than adequate brace components.

    I will never look at any study the same way again. Both Wong (and Weiss) are not certified at a level proficient enough as to provide this treatment unsupervised. If they were - they would be listed as such on the Spinecor manufacturer's web page, where one can find certified providers world wide. In fact, of those listed on the manufacturer's web page as being proficient, two are independent of the surgeon inventors and manufacturer and have published studies showing far more success.

    I think journal and SOSORT acceptance criteria for such studies should be a bit tighter in the future. If a provider of a given treatment is not qualified to administer that treatment unsupervised they should not be granted funding to do a study or submit their findings. Furthermore, perhaps any manufacturer should not be selling braces to anyone not qualified at a proficient level as defined above. A very valuable learning experience this - and relative to any future study we may read regarding any treatment.

    Last edited by mamamax; 12-05-2009 at 09:09 AM.

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    Nothing in the rest of the thread negates the FACT that someone, either Wong (with no dog in the fight) or Spinecor (with the only dog in the fight) is mistaken or lying in this.

    Spinecor is on thin ice claiming Wong et al. were not qualified. There is almost no chance Wong et al. would have done that study without getting the qualification certificates because it wouldn't make it out of peer review otherwise.

    We'll wait and see if this goes any further within professional circles.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by mamamax View Post
    Furthermore, perhaps any manufacturer should not be selling braces to anyone not qualified at a proficient level as defined above.


    Don't hold your breath. They exist to turn a profit.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by Pooka1 View Post


    Don't hold your breath. They exist to turn a profit.
    Don't think I didn't think of that Sharon - which lead me to ponder how many other times something like this may have happened with other bracing types - rather irritating isn't it?

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    Quote Originally Posted by Pooka1 View Post
    Nothing in the rest of the thread negates the FACT that someone, either Wong (with no dog in the fight) or Spinecor (with the only dog in the fight) is mistaken or lying in this.

    Spinecor is on thin ice claiming Wong et al. were not qualified. There is almost no chance Wong et al. would have done that study without getting the qualification certificates because it wouldn't make it out of peer review otherwise.

    We'll wait and see if this goes any further within professional circles.
    I think an official word from a manufacturer is an important document (one they certainly know can be used in a court of law).

    The six page rebuttal from Spinecor is very detailed and truly explains a LOT ... cannot upload it here as the forum features do not allow a document over 100kb to be uploaded - the rebuttal is something like 142 - but you can access the entire document in post #10 here:
    http://www.fixscoliosis.com/forum/th...vs-rigid-Brace
    Last edited by mamamax; 12-05-2009 at 09:52 AM.

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    Yes it is irritating and not helpful whether it is done consciously or inadvertently.

    Reason #4,940,113 why the literature is a mess.

    Science works best by disproving false things. It doesn't work so well when you START with a preconceived notion that something is correct and then design experiments or cherry pick data to support it.

    It is FAR more impressive when an idea withstands a grueling test to falsify it than if yet another creampuff softball study done by the inventor comes out.

    The best evidence is when the inventor designs that grueling falsifying test themself and the thing comes out looking good.

    This also works for literature reviews.

    If you cherry pick aberrant papers in the literature just because they appeal to a pet hypothesis and tout them as the only correct results in a sea of opposite findings, or if you quote-mine individual paragraphs, sentences, and even phrases that "stand out" to you, that is NOT likely going to advance the understanding of a subject.

    What is likely to advance the subject is carefully dissecting aberrant papers for flaws. Not all aberrant papers are wrong but until you look for the flaws, they shouldn't be paraded around as correct. And many of course can be shown to be fatally flawed which explains their aberrant position. The poster child for this is the Danish Twins study which is likely an annoyance at this point to researchers having to constantly mention it and shoot it down. It never should have been published.
    Last edited by Pooka1; 12-05-2009 at 09:46 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by mamamax View Post
    I think an official word from a manufacturer is an important document
    I think it is a piece of self-serving nonsense.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by Pooka1 View Post
    Yes it is irritating and not helpful whether it is done consciously or inadvertently.

    Reason #4,940,113 why the literature is a mess.

    Science works best by disproving false things. It doesn't work so well when you START with a preconceived notion that something is correct and then design experiments or cherry pick data to support it.

    It is FAR more impressive when an idea withstands a grueling test to falsify it than if yet another creampuff softball study done by the inventor comes out.

    The best evidence is when the inventor designs that grueling falsifying test themself and the thing comes out looking good.

    This also works for literature reviews.

    If you cherry pick aberrant papers in the literature just because they appeal to a pet hypothesis and tout them as the only correct results in a sea of opposite findings, or if you quote-mine individual paragraphs, sentences, and even phrases that "stand out" to you, that is NOT likely going to advance the understanding of a subject.

    What is likely to advance the subject is carefully dissecting aberrant papers for flaws. Not all aberrant papers are wrong but until you look for the flaws, they shouldn't be paraded around as correct. And many of course can be shown to be fatally flawed which explains their aberrant position. The poster child for this is the Danish Twins study which is likely an annoyance at this point to researchers having to constantly mention it and shoot it down. It never should have been published.
    Someone might say that pigs are flying (and breaking the sound barrier) but - I actually agree with you on this (generally speaking)!
    Last edited by mamamax; 12-05-2009 at 10:16 AM.

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    Quote Originally Posted by Pooka1 View Post
    I think it is a piece of self-serving nonsense.
    This we do not agree on (in this case), which involves a large controversy. In times of controversy, a detailed published rebuttal from a manufacturer serves to set the record straight, point-by-point ... and also, serves as a legal stand in a court of law.

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    Quote Originally Posted by mamamax View Post
    Don't think I didn't think of that Sharon - which lead me to ponder how many other times something like this may have happened with other bracing types - rather irritating isn't it?
    Unfortunately, it's well known patients don't always receive the treatment best suited for them. While we'd all like to believe every doctor (MD, DO or DC) and/or surgeon has our best interests at heart, it simply isn't true across the board. I'd venture to guess for every patient who receives the most appropriate brace, the most appropriate hardware/instrumentation, another does not. Not only that, plenty of people push products in which they have a vested interest - whether that's owning stock in the manufacturer, receiving money for promotional spots, or reaping the monetary benefit of research funding.

    It IS a business, and it's big business.

    A good example of "is it best, or is it profitable?" is demonstrated by the continued use of growth rods vs. VEPTR.

    While VEPTR has documented great success (importantly, in treating scoliosis absent Thoracic Insufficiency Syndrome), there are still doctor/facilties who persist in using growth rods - despite guaranteed spontaneous fusion . Look deeper, and you'll find most of those surgeons receive some sort of funding for growth rod studies from growth rods manufacturers.

    It's an incredible disservice to patients, and it brings a large responsibility on us to self-advocate.

    There's a great blog I've been following since inception that demonstrates just how much money drives the spine industry: While not specifically geared toward patients, some of you who like to stay current on technology should enjoy it. Posts in the last few days include XLIF ...

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


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    Quote Originally Posted by txmarinemom View Post
    Unfortunately, it's well known patients don't always receive the treatment best suited for them. While we'd all like to believe every doctor (MD, DO or DC) and/or surgeon has our best interests at heart, it simply isn't true across the board. I'd venture to guess for every patient who receives the most appropriate brace, the most appropriate hardware/instrumentation, another does not. Not only that, plenty of people push products in which they have a vested interest - whether that's owning stock in the manufacturer, receiving money for promotional spots, or reaping the monetary benefit of research funding.

    It IS a business, and it's big business.

    A good example of "is it best, or is it profitable?" is demonstrated by the continued use of growth rods vs. VEPTR.

    While VEPTR has documented great success (importantly, in treating scoliosis absent Thoracic Insufficiency Syndrome), there are still doctor/facilties who persist in using growth rods - despite guaranteed spontaneous fusion . Look deeper, and you'll find most of those surgeons receive some sort of funding for growth rod studies from growth rods manufacturers.

    It's an incredible disservice to patients, and it brings a large responsibility on us to self-advocate.

    There's a great blog I've been following since inception that demonstrates just how much money drives the spine industry: While not specifically geared toward patients, some of you who like to stay current on technology should enjoy it. Posts in the last few days include XLIF ...

    Regards,
    Pam
    EXCELLENT well thought out comments. I look forward to what we may learn from the BrAIST study regarding bracing (and who may do best with what). This will be the largest such study historically and stands to serve as the most important as well. Some input from Lori Dolan here: http://www.scoliosis.org/forum/showthread.php?t=9641

    As for VEPTR (which I admittedly know little to nothing about), maybe fodder for it's own thread

    Another good thread topic: Why is there no specific scoliosis agency under NIH that would allow sufficient funding for both surgical and non surgical methods and ultimately establish which method would serve which patient best??

  13. #13
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    I havent followed all the threads about spinecor...but i do know this...

    when has a manufacturer said bad things about their product, unless ordered to tell the truth by a court of law? what is a statement by a manufacturer worth... they certainly dont want to put themselves out of business! it is completely expected that a corporation will defend their product.... to the end!!

    jess

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    Quote Originally Posted by jrnyc View Post
    I havent followed all the threads about spinecor...but i do know this...

    when has a manufacturer said bad things about their product, unless ordered to tell the truth by a court of law? what is a statement by a manufacturer worth... they certainly dont want to put themselves out of business! it is completely expected that a corporation will defend their product.... to the end!!

    jess
    Not only that but they make calculated decisions about what they can get away with, including paying liable judgment brought by researchers let's say, and still turn a profit.

    It's a calculation and as long as the bottom line is improved, they will make decisions that may not be honorable, honest, have integrity, etc..

    It's a business. All businesses do this.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by Pooka1 View Post
    Not only that but they make calculated decisions about what they can get away with, including paying liable judgment brought by researchers let's say, and still turn a profit.

    It's a calculation and as long as the bottom line is improved, they will make decisions that may not be honorable, honest, have integrity, etc..

    It's a business. All businesses do this.
    That's so accurate. Practically every company that manufactures and markets a product has a team that does nothing but analyze "acceptable risk/exposure".

    "Can we net at least ____% more than we pay out in claims for defects, deceptive advertising and liability?"
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

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