Monday, January 05, 2009

Janus of SpeechEasy is misleading us

Misleading stutterers is not just about claiming a cure in 9 minutes, in 15 days or only when you are working hard enough. That's the obvious way to mislead. Have a look at the Speech Easy device website produced by Janus Development. They are the masters in perfection. I'll expose two of their tricks: sublime messaging, and biased reports on success. And I spare you with the go-to-clueless-Oprah-to-get-approval trick; it is too obvious.

Read the message on the main page:  Do You Want to Stop Stuttering? You are not alone. While you will not stop stuttering completely (there is no cure for stuttering), we can help you take back control of your speech, and your lifeA stroke of marketing genius.  At first sight, beautifully compensate speech. As their coporate mission state: We are passionate in our mission to help people who suffer with speech disorders. They say the right things: no cure, therapy is about taking control, and they acknowledge our pain and fear. Now switch on your Karl Rove, and read the passage again: Do You Want to Stop Stuttering? You are not alone. While you will not stop stuttering completely (there is no cure for stuttering), we can help you take back control of your speech, and your life. That is what the brain reads, because that's what the brain wants to read. And, acknowledgement of our pain and fear turns on the fear and pain of the reader. Read on: You'll no longer fear social functions, avoid ordering food at a drive through, or keep quiet when you really want to speak out. Passionate about people who stutter? Or passionate about lowering the inhibition of stutterers and their families to make informed decisions?

You might disagree with me on sublime messaging, but you cannot disagree with me on the misleading presentation of evidence for efficacy. Let's bit a bit nerdy and go through the Professionals section and Efficacy/Research subsection. There are four topics: Published Abstracts, Bibliographies, Ongoing research, Case Studies, and FDA Information.

Let's start with the Published Abstracts. The website states: The treatment of stuttering and the Speech Easy fluency device are the subjects of the following abstracts of six selected published articles, and then they list the six articles' abstracts. The first five articles are from the East Carolina University group based in Greenville. Note that Janus Development, the seller of the Speech Easy device, is also based in Greenville. This is not a surprise because it is a spin-off from the university as far as I know. Are there conflicts of interests?  Should they not at least make public this relationship? There is only one non-Greenville article from a Canadian group that I have never heard of. But, be aware they have done nothing wrong, they just point us in a direction. Everyone has the right to point someone in a direction, right?

The bibliography is a misnomer as it seems to be the list of publication of the Greenville group. A simple link to Pub Medline gives a much better overview of the field: click here. I find 40 different published articles, notably from Professor Howell at University College London. The idea of the device is not new, and other groups have done efficacy studies. Why only the Greenville group's research? Again, nothing is legally wrong, right?

Let's move on to the Archilles' heel, Ongoing Research. Again, it is factually correct, but highly highly misleading. The website mentions two efficacy studies: one by Molt, and the other related to Parkinson. First, we can agree that the Parkinson study is useless in the context it is presented, especially because other relevant outcome studies are completely ignored! So let's look at the Molt study. The Molt study started in November 2004 (according to press release). It is funded by Janus and there is still no published article four years later.  I attended a lecture where he presented preliminary results, at the Dublin IFA conference. His talk and approach to research did not strike me as particularly rigorous, especially the way he represented his data graphically was very atypical to a trained scientist. He is more a speech therapist than scientist and intended well, and clearly warned that the results are preliminary. There were only 12 patients. What happened afterwards? I vaguely remember that someone told me that he was ill. Does Molt agree with the way they are characterizing his research. The key question is: Why do they not mention the other studies that have started after Molt's study and that are published?  The answer is easy: the result is less than promising. Forget the Molt study. They should publish those two recent studies.
Effects of the SpeechEasy on objective and perceived aspects of stuttering: a six-month, Phase I clinical trial in naturalistic environments. Pollard R, Ellis JB, Finan D, Ramig PR. J Speech Lang Hear Res. 2008 Aug 11.
The effect of SpeechEasy on stuttering frequency, speech rate, and speech naturalness. Armson J, Kiefte M. J Fluency Disord. 2008;33(2):120-34. Epub 2008 May 7.
They are creating the illusion that the device is well supported by evidence, and that the actively seek the evidence. It is obvious that they don't. They are effectively hiding those two articles from the reader by not quoting them, and thereby mislead people. But again, it is legal. Every single statement is factually correct.

Let's talk about the last two topics briefly. Case Studies: They are reports from therapists. Most refer to short-term effects: we tried it and that's what happens. I wonder how many therapists wrote positive fluency  reports about me, and here I am...   FDA Information: As far as I understand, the FDA says that the device is not causing death or something like that and so you can sell it. Nothing about efficacy, but it sounds good.

To summarize, Janus is clearly misleading customers by not referring to ALL published outcome studies. 

If you are interested in the latest review, check this article and discussion by Ellis and Pollard, the researchers with cool sunglasses.

5 comments:

Kostja said...

I found interesting story on BBC website about woman Heidi who tried SpeechEasy.

1. Part
'I'm not stammering any more'
http://news.bbc.co.uk/2/hi/health/5327316.stm

Video:
http://news.bbc.co.uk/player/nol/newsid_5330000/newsid_5333600/5333650.stm?bw=bb&mp=wm&asb=1&news=1&bbcws=1


2.Part
Heidi talks about how her treatment has gone

Video:
http://news.bbc.co.uk/player/nol/newsid_5330000/newsid_5334800/5334880.stm?bw=nb&mp=wm&news=1&bbcws=1

AAAlbert said...

Hi Tom,

The question you posed is, in my opinion, about ethics for business people and researchers. I suppose you agree that we cannot ask for the same high ethical standards for businesses as researchers, that, while we charge scientists for being biased, it is really natural to see commercials boasting this and that. We know they are commercials and as long as they are not far away from the truth, I think that is acceptable.

In regard of stuttering therapy/device/medicine promotions, my standard is, compared to yours, much lower. As long as I don't see any "cure", I am okay with it. Probably it is because I have seen more outrageous "cure" claims than people who don't read Chinese.

Tom Weidig said...

Albert,

No, no no no I completely disagree.

Selective reporting is also a big problem in the finance industry. Some investment companies only reported their high-return funds whereas they other were coveniently left out.

This is changing. There are reporting standards like the GIPS (global investment performance standards) which force companies to report ALL their funds.

The same principles should apply for Janus. If they are true to their corporate mission, they must stop this misleading information. If not, they are hypocrites.

Tom

AAAlbert said...
This comment has been removed by the author.
Prin said...

Hi Tom Weidig

Do you stutter or stammer?

If you do, have you even tried the speech easy device?