Inside Cochlear Implant Online: Disclosure?

(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 is online 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.

About A Deaf Pundit

A Deaf Pundit holds a Bachelor of Science degree in Public & Nonprofit Administration. In her spare time, she enjoys fantasy novels, gaming and wandering the vast Deaf social media world. View all posts by A Deaf Pundit

9 responses to “Inside Cochlear Implant Online: Disclosure?

  • Cochlear Implant Online: Ethics? « The Deaf Edge

    […] June 11, 2008 Cochlear Implant Online: Ethics? Posted by A Deaf Pundit under Blogging, Deafness, Musings   (Continued From Part Two) […]

  • Anonymous

    Deaf Pundit, good write-up. When you said: “Brandy recruits, develops & trains volunteers to spread awareness about treatment options for hearing loss and the Cochlear and Baha implants,” I don’t recall that the C in Cochlear was capitalized in the original blog. My interpretation of that statement was that it meant cochlear and BAHA implants in the generic sense, not Cochlear Corporation CIs specifically. BAHA is not a company either.

    I don’t think there’s any question that Rachel and Melissa do have a relationship with Cochlear Corp. But should Rachel and Melissa have explicated this relationship in the relentless detail like you have? I somehow doubt either of them were deliberately vague or purposely concealed that relationship for financial gain. I also doubt that they were getting significant amounts of cash or compensation. Other people with CIs have similar relationships with their CI makers and they’re still on DeafRead. Other people who are proponents of ASL and bilingualism are affiliated with schools, agencies, and service providers, or sell products (for or not for profit) and are still on DeafRead.

    My question is that the “rule” about not using one’s blog for profit is not being applied equitably. Will you also do this type of in-depth research about other bloggers, for example Amy Cohen Efron and Joey Baer?

  • Robyn

    The Training in Sydney is for Australian Volunteers, not American volunteers. And I’ve covered the training aspects in my blog. Of coures there will be training though – all volunteers for any organisation whether it be for Red Cross, or the Blind Foundation, get training for their volunteer duties, so in my opinion, you’re just splitting hairs.

    Cheers
    Robyn

  • Moebius

    I want to clarify the anonymous person’s claim that cochlear is not capitalized in the statement about Brandy. It IS capitalized, and Baha is not typed in capital letters, but is typed as it is in this paragraph, along with a trademark symbol (‘R’ in a circle).

  • Moebius

    Furthermore, if you read about Robyn’s experience with her deaf children, you will see that they were fitted with Nuclear devices, which is written in the statement with a capital N along with the same trademark symbol every time it is written.

  • Anonymous

    I stand corrected, moebius. thanks. any comments about the rest of my question?

  • Ann_C

    Yes, I do wonder what about the question Anony posed regarding anyone doing in-depth research on other bloggers’ “commercial”
    affiliations, such as Joey Baer’s blog and BB Curve, Amy Cohen-Efron’s blog and her “Greatest Irony” DVD sales, Jack’s Eyes, and umpteen others. How about being earnest about this research? How about equal consideration?

    It’d be a mammoth undertaking, considering how many v/blogs enter DR.

    The fact that there are other DR v/blogs who are “commercial”, no matter how blatant or subtle, does cause some readers to wonder and speculate about why DR editors zeroed in on CIO, and not on any other blogs.

  • A Deaf Pundit

    Ann_C,

    I personally do not see a story with those individuals. If I see a story that is of public interest, I will blog it.

    People seem to forget that I went after John Egbert for his attempt to censor DeafRead. EDIT: To clarify, to censor blogs that John wanted to see off DeafRead.

    And I believe my blog speaks for itself – regardless of a person’s preferred language, usage of assistive devices… if I see something that I suspect to be unethical or something I believe that is of public interest, I will blog about it.

    EDIT: Here’s the link: https://deafpundit.wordpress.com/2007/12/16/baaaaaad-idea-john-egbert/

%d bloggers like this: