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Inside Cochlear Implant Online: Disclosure?

Posted Nov 04 2009 10:02pm

(Continued from Part One)

Where Is the Full Disclosure?

So, how can the information presented in the previous post be central to this controversy? I’ll tell you what it is: It is reasonable to expect that Melissa and Rachel understand about full disclosure – more so than the average person does. But until CIO’s boot from DeafRead, Melissa and Rachel never disclosed that C.A.N. was owned by Cochlear Americas, which is a for-profit company.

Then there’s the matter of whether Rachel herself benefits in any way from Cochlear Americas, aside from her cochlear implant. While there is no evidence to indicate that Rachel gets compensated for volunteering with C.A.N., it does appear that she indirectly benefits financially from Cochlear Americas itself.

Rachel won a Graeme Clark Scholarship in February 2007 as shown here, which is funded by Cochlear Americas. It is not known how much the scholarship covers her college tuition. While Rachel did disclose that she won this scholarship, she did not make it explicit to the readers that this scholarship was funded by Cochlear Americas.

With CIO, Rachel makes it extremely clear that CIO is solely a cochlear implant resource website. While she does shares about her two C.I. failures in the blog post “ Am I Hiding? No… “, she mainly writes about how the CI company handled the failures and how they are researching to improve the product. Rachel then ends the post with this, “ The fact is that failure rates for CIs overall are very low. For my brand, Cochlear, it’s about 1%, and there are many people with 15 to 20 – year old Nucleus 22s that are still going strong.

Would an independent cochlear implant resource website post statistics like the aforementioned one Rachel did?

Then there’s the matter of how extensive are the training and compensation the C.A.N. advocates get and whether they were fully disclosed to the public.

Melissa writes on the CIO blog (comment #25) on June 3, 2008, about compensation: Cochlear volunteers have the option of collecting points which we can use towards Cochlear merchandise, such as batteries, earhooks, etc., but then we have to report this as volunteer income to the IRS. The other option is to simply be a volunteer and not get the points. While I have opted to get the points, Rachel has opted out of receiving points. Therefore, she gets absolutely no compensation from Cochlear for her volunteer work.

Robyn from The Ambling Rambler in the #12 comment, then provides more details: I am not paid for speaking at these events. Occasionally the event manager will give me a cheque as a thank you for speaking, which I in turn donate to The Pindrop Foundation to raise money for Cochlear Implants in New Zealand. They might give me a petrol voucher, and I will gladly use that.

Cochlear will pay any out of pocket expenses, for example, if a talk is a long way out of town, they will pay for a hotel room and a meal, and mileage to get there, but that is all. That covers expenses, but it is still in no way profiteering from it.

It is interesting to note that C.A.N. itself does not discuss compensation in the web pages accessible to the public. So the public does not necessarily know the extent of the compensation the advocates receive.

In the matter of the training the advocates receive from C.A.N., Melissa on June 3, 2008 stated on DeafRead’s Official Blog, regarding the job of the volunteer manager. She writes: The volunteers’ relationship to the manager consists of the following: We email our activities to the manager each month, and she sends out a newsletter periodically containing news such as positive stories from a recent bilateral CI recipient. Rarely is direct guidance contained in the newsletters. In fact, the only such guidance that I can specifically remember was telling us not to get into “brand wars” and telling us not to reply directly to medical questions but, instead, to refer these questions to the physicians.Our regional manager has never instructed us on what to post on blogs or listservs. That is not her function. [Emphasis added]

This appears to be incongruent with the statement made by Melissa on the CIO blog, comment #37 where she states: The only support I’ve gotten from Cochlear isonline training in presenting accurate information, which also included strongly worded guidance that we were not to push brand choice. [Emphasis added]

However, both of those statements also appear to be incongruent with Rachel’s manager, Brandy Harvey’s job description. Rachel wrote about Brandy in her June 2, 2008 post, and linked to the article about Brandy. In the article, it explains about what Brandy does in her job. “ Brandy joined Cochlear Americas as an Awareness Manager in October of 2006.Brandy recruits, develops & trains volunteers to spread awareness about treatment options for hearing loss and the Cochlear and Baha implants. [Emphasis added]

If what Melissa said is true about volunteers barely getting any guidance, then why did she receive online training and why is Brandy being paid to train volunteers? Then one has to consider C.A.N.’s statement about training in their FAQ on their website: “Cochlear values its Advocates and wants to make sure each has the skills they need. Cochlear regularly takes advocates to their head office in Sydney where a couple of days training takes place. Regular information is provided and soon training will be available to advocates in a members only section of this web-site.”

This, at the very least, appears to make Melissa’s statements appear very inconsistent and raises many questions.

Next – The Link Between Cochlear Implant Online & C.A.N.

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