Category Archives: Blogging

Inside Cochlear Implant Online: Ethics?

(Continued From Part Two)

The Link Between Cochlear Implant Online and C.A.N.

It is not precisely clear what skills C.A.N. is referring to in their FAQ, but when one looks at the Benefits section, the training aspects are outlined. Advocates share their stories, provide resources and so on. This appears to directly fit in what CIO is doing as a cochlear implant resource website. This leads one to easily think that the activities of CIO is solely for being part of the C.A.N. advocacy efforts especially considering the fact that both bloggers, Rachel and Elizabeth are C.A.N. volunteers, and Melissa, which could be arguably called the backbone of CIO, is a C.A.N. volunteer as well. This makes a total of three C.A.N. volunteers involved with CIO.

But could all of this just be a coincidence? That’s difficult to say. Note that Melissa writes, (comment #25), “Therefore, she gets absolutely no compensation from Cochlear for her volunteer work.” But she didn’t state whether CIO was part of their volunteer activities for C.A.N. or not.

Melissa in her comment (#151) writes, “My hope is that Rachel’s generation forward will be able to transcend this bitterness. She put her blog up on DeafRead to show others what is possible today. Whether or not DeafRead reinstates her blog, she’ll still be online just as she was for 7 years before she put her website on DeafRead. Parents will find her, and then they will find only her and so will only hear what she has to say. By booting her from DeafRead, the editors have shot themselves in the foot, for when parents found Rachel’s blog on DeafRead, they found all points of view in one place. Now, instead, they will only find Rachel’s.” [Emphasis added]

There is no way to pinpoint just how active CIO was active before 2006, since like stated previously, the archives only go back to 2006. When one looks through the archives, there is only one entry in the year of 2006.

Then in the year of 2007 there are only four posts. That brings the total of CIO’s entries prior to joining DeafRead in January 2008, to a grand total of five posts. Now, after joining DeafRead, and before being forcibly inactivated by DeafRead, CIO had one hundred three posts on DeafRead in the span of almost five months. That averages to seventeen posts per month.

Just a mere coincidence there?

The Question of Companies and Their Marketing Ethics

Now, there are some who argue that everyone who read CIO and the DR Team should have known C.A.N. was owned by Cochlear Americas because it’s obvious to them. However, if one looks at the C.A.N. website, in my opinion, it is not immediately apparent that this is owned by Cochlear Americas. The website has a garish background, cheap formatting and numerous typos within the FAQ and elsewhere. While there is a link to Cochlear Americas, there is no statement on C.A.N’s website that they are owned by Cochlear Americas. One has to go to the Cochlear website to see that in fact, Cochlear Americas owns C.A.N. The network happens to be also mentioned in Cochlear Americas’ 2007 annual report.

It goes without saying that C.A.N. being managed by a for-profit company that sells the very product that the network advocates for, Cochlear Americas and the rest of the cochlear implant industry can only stand to benefit from it. It is highly dubious that C.A.N. advocates would present any facts that would cast nothing more than a positive light on CI products.

These actions lead to the question of whether CIO and C.A.N. are engaging in the practice of stealth marketing, which is generally considered to be unethical. From the Advertising and Marketing Bulletin, Stealth marketing, a subset of word-of-mouth marketing (“WOMM”) strategies, is marketing that promotes a product without disclosing any direct connection between the advertiser and the message. [Emphasis added]

Not Only Stealth Marketing but Astroturfing?

And this also leads to the question of whether C.A.N. is engaging in not only stealth marketing, but also what is known as astroturfing. Wikipedia defines astroturfing as: The goal of such a campaign is to disguise the efforts of a political or commercial entity as an independent public reaction to some political entity—a politician, political group, product, service or event. Astroturfers attempt to orchestrate the actions of apparently diverse and geographically distributed individuals, by both overt (“outreach”, “awareness”, etc.) and covert (disinformation) means. Astroturfing may be undertaken by anything from an individual pushing one’s own personal agenda through to highly organized professional groups with financial backing from large corporations, non-profits, or activist organizations.

One would think that C.A.N. should know about the ethics of marketing, when their director, Jeff Graunke, clearly stated on his LinkedIn page – which now apparently is no longer available, but here’s a screenshot of it: Jeff Graunke\'s LinkedIn Page that clearly states he was a former Regional Sales Manager for Cochlear Americas.

This information is especially disturbing in light of the Federal Trade Commission’s statement, which was published by the Washington Post in 2006, about word of mouth marketing. In the first paragraph of the article, it states: The Federal Trade Commission yesterday said that companies engaging in word-of-mouth marketing, in which people are compensated to promote products to their peers, must disclose those relationships.

How can C.A.N. not know marketing ethics? How can Cochlear Americas and other cochlear implant companies not know this either? How can Melissa, considering her C.A.N. training and her magazine writing/editorial background, not have any problems with this?

In light of all of this information, which I never anticipated to just be several mouse clicks away, I feel quite comfortable in saying that DeafRead was fully justified in removing Cochlear Implant Online from their subscriptions. This appears to go far beyond Cochlear Implant Online and all the way up to Cochlear Americas itself. With each mouse click, I uncover more and more information like this. The connections, links and information seems to be never-ending, and I’ve worked on this for long enough. And I’m pretty sure people who are reading this will take it upon themselves to verify the information, and uncover more information. Who knows what we will find next? I am just left standing here, completely staggered…

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.

Inside Cochlear Implant Online: Who Are They

On June 3, 2008 the DeafRead team announced that they were inactivating Rachel Chaikof’s blog, Cochlear Implant Online [CIO], from the DeafRead aggregator. Immediately since her debut on DeafRead on January 13, 2008, Rachel and her blog has been embroiled in controversy. Some DeafRead viewers felt her blog was merely a thinly veiled advertisement for cochlear implants.

Due to the intense controversy over Rachel’s blog and its subsequent removal from DeafRead, I decided to do some digging. Due to the amount of the information I have discovered, this will be broken up into three blog posts. All of the information I have discovered is on the Internet – mainly from Rachel’s blog itself. The information I am presenting will be undoubtedly controversial, and in all likelihood, I will be labeled anti-CI and possibly a stooge of DeafRead.

So allow me to state this: I believe that cochlear implants are a tool, and it is all about how people use that tool. In regards of DeafRead, while I am friends with some of the DeafRead editors, DeafRead business remains their business, and nobody dictates what I blog. All of those things I believe, do not in any shape or form diminish the facts that I am going to present here.

To understand the controversy a bit better, I believe that we need to look at the backgrounds of Melissa, Rachel, the history/purpose of CIO and the purpose of the Cochlear Awareness Network [C.A.N.] first. All of the information about their background is pertinent to the controversy itself and will become clear later on.

Who’s Who

Melissa is the mother of Rachel, the blogger of CIO. We do not know very much about Melissa herself, but we do know that Melissa is a volunteer for C.A.N., per her comment #25 here on June 3, 2008. Then I found this tidbit – Rachel writes on March 3, 2008, “So, at one point, I saw a cochlear implant organization magazine on the kitchen table and picked it up. my mom was a writer and an editor for the magazine. [Emphasis added]

Rachel is the blogger of CIO, and was one of the first at such a young age to receive a cochlear implant (a Nucleus brand). In high school At her university, she was is an editor of her school newspaper. Currently, she is majoring in Photography at a private arts university in Georgia, and aspires to be a photojournalist one day. Rachel is also the winner of the Graeme Clark scholarship (February 2007), and is a volunteer for C.A.N. as of December 2007.

History and Purpose of Cochlear Implant Online

The exact date of CIO’s inception is unknown but on June 2, 2008, Rachel states CIO has been around since 2001. Since Rachel was not of age in 2001, it is reasonable to assume that her mother, Melissa was involved in establishing CIO. However, the CIO archives do not go back to 2001, but only back to 2006. So it is extremely difficult to ascertain how active CIO was prior to 2006.

As for the purpose of CIO, Rachel writes, “This website is not the place for me talk about my personal life. This website is merely a cochlear implant resource.

Purpose of Cochlear Awareness Network

Onwards to C.A.N., which is a major component of this controversy. What exactly is C.A.N.? They explain on their website’s FAQ: The Cochlear Awareness Network is a group of volunteers each of whom have lived deaf but have had their hearing returned through technology. They have chosen to be members of the Network to tell their stories, proqactively [sic] raising awareness for the wonderful changes in their lives.

Basically Advocates tell their own story. They do this by making presentations to community and interest groups or clubs or one-on-one to potential receipients. [sic] They may also seek publication of their personal story in local newspapers. They may also help out at trade shows and talk to people referred by their local Cochear [sic] Implant Clinic.

They continue on to explain the benefits of being a C.A.N. volunteer, or rather as they call it, advocate:

* Sharing your story helps others know there are solutions to many kinds of deafness
* Provides a resource for others
* Professionals hear your story and tell their patients
* Corrects wrong information in the market place
* Helps people make a decision about a Cochlear Implant or Baha procedure.

Next – Where Is The Full Disclosure?

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