Interview with Donna Sorkin, Vice President for Consumer Affairs, Cochlear Americas

Donna Sorkin

Carolyn Smaka: Hello Donna, thanks for talking with me today. Can you please tell me about your background and what you do at Cochlear Americas?

Donna Sorkin: Sure. My title is Vice President, Consumer Affairs and I have a variety of responsibilities;I am fortunate to have a very diverse job at Cochlear (www.cochlear.com). I work on habilitation issues for adults, children and the professionals who serve them, as well as direct our HOPE program, which provides (re)habilitation support and resources.

The other part of my job is leading public policy initiatives for the company addressing reimbursement and other aspects of access to care. We collaborate with consumer and professional organizations and with other companies in our industry.

My background is as a consumer advocate. Before joining Cochlear Americas, I was the director of the two national organizations for people with hearing loss: Hearing Loss Association of America and the Alexander Graham Bell Association for the Deaf and Hard of Hearing. I have had a cochlear implant since 1992 which provides me with additional perspective.



SMAKA: Speaking of cochlear implants and coverage, I just heard that legislation passed in Wisconsin requiring private insurance companies to pay for implants for persons under 18 years of age. What are your thoughts on this?

SORKIN: Yes, it did, and I think that is really exciting. It is going to be really interesting to see how it plays out. The reality is that cochlear implants are already covered by most private insurance providers. So, the coverage challenges really relate more to bilateral implantation and the Baha® implant for persons with conductive and mixed losses or single-sided deafness. And, as you know, hearing aid coverage is still a major concern for people of all ages.

SMAKA: Agreed. We are here today to talk about Sound and WAY Beyond™. Can you start by describing exactly what it is?

SORKIN: Sure. Sound and WAY Beyond is an interactive software product designed to be used by adults and teens who have cochlear implants. It is for home use by recipients to help them learn to recognize the sounds of life from simple tones to speech and music to achieve their personal best. We consider this to be part of a comprehensive program of rehabilitation that every adult or teen cochlear implant recipient should at least consider use of and hopefully pursue. The product also has modules for sentences and has the capacity to guide the user through progressively harder exercises over time. So if someone starts using it immediately following activation of a cochlear implant, he or she can begin at a very basic level. With progress and improvement, the program can increase the level of difficulty. It has the ability to introduce, for example, background noise, and has different voices, so some of the speech materials are harder to understand than others.

When used in the recommended manner, Sound and WAY Beyond helps the recipient go through the repetition and redundancy that helps train the brain to recognize sounds. The reason that it includes "WAY Beyond" in its name is because there was an earlier version of this product that we previously distributed that had a more limited set of practice materials. This is a more powerful version.



To produce this advanced version of the product, the product's developer and our collaborator—the House Ear Institute's Dr. Qian-Je Fu, started with the general content and structure of the original Sound and Beyond™. Working together with the House Ear Institute —the developer of this product — we developed advanced modules to provide more material for experienced listeners or people who had mastered the basic modules, and want to improve their listening skills from good to great.

We demonstrated Sound and WAY Beyond product at our Celebration 2009 event. This was the world's largest gathering of cochlear implant recipients. We had some people wearing implants for as long as ten years try the program. Most of them whizzed right through the basic modules but when they tried the advanced modules, there were exercises that challenged them such as listening in noise and the melodic (music) contour training. A number of them wanted to purchase the product to improve on some of those more difficult listening tasks.

SMAKA: So Sound and WAY Beyond should be one part of an overall rehabilitation program?

SORKIN: Yes. We want to emphasize the importance of a comprehensive aural rehabilitation program. There are other tools that can also help a cochlear implant recipient develop his listening skills.

Sound and WAY Beyond as a practice tool will be most powerful when the results are shared with the individual's cochlear implant audiologist and therapist. While families of young children with cochlear implants are routinely encouraged to pursue habilitation, teens and adults are less likely to pursue rehabilitation post cochlear implantation. We encourage adults to pursue therapy and find a professional to guide their rehabilitation and also be a coach and mentor. It is important that the recipients are practicing correctly.

The power of this product is as a home practice tool. Being able to use the tool at home provides easy access to the drills, which is important if someone is going to use the software in the recommended way (30 to 60 minutes daily/5 times per week).

SMAKA: It sounds comprehensive.

SORKIN: Yes, it really is. Since it includes over 10,000 words and sounds it provides broad exposure to diverse sounds. Research undertaken by the House Ear Institute reported that that if the program is used as recommended, it can improve outcomes by as much as 15 percent (Fu & Galvin, 2008).

Another important feature is that the user can also print out a report that provides detail on results as well as how long the individual has been practicing. The report for vowels and consonants is called a Confusion Matrix and it shows what sounds were missed and what they were confused with.
The user can print out that matrix and share it with their audiologist or therapist, making it a very nice tool for someone to use in concert with professional support.

SMAKA: You mentioned that people came to your booth at Cochlear's Celebration that had been using cochlear implants for as many as ten years and although they were already very successful cochlear implant users, they still thought they might benefit from Sound and WAY Beyond. Donna, how long is that window of opportunity where you can continue to improve with a cochlear implant?

SORKIN: I don't know that we have an answer to that question. Our perspective on how long the improvement period lasts has really changed over time. When I received my implant in 1992, I was told that I would probably plateau after about one year. Fortunately that was not the case! I have continued to improve over time aided by improvements in the sound processor technology (I have had four sound processor upgrades in that time period) but with the same internal cochlear implant device.

If someone is a very good user, he or she might top out with sentences. So with words and sentences scores on Sound and WAY Beyond (and of course in a testing situation), some people can get to 99 percent pretty quickly. But, then what is harder are single words, and especially hearing speech in noise. There are advanced modules for those who have mastered basic listening skills and want to focus on these more advanced skills.

Another area where improvements can often be made with practice is music. The advanced modules include melodic (music) contour training. This particular set of exercises presents the user with a series of notes. Afterwards it presents nine possibilities for what was heard in terms of whether the notes were going up, down or were the same. The user listens, selects what he thinks he heard among the nine choices, and then hears it again and finds out if the selected answer was correct. There are also options in terms of instrument and number of semitones. With this kind of training, users have the potential to improve their listening skills in terms of pitch perception. We believe that there's carryover from this task to music appreciation, which is an area where many cochlear implant users report difficulty.

There's been more emphasis now on music with cochlear implants than in the past. When I received my implant 16 years ago, I was told that I probably would not enjoy music. I discovered — actually not that long after I received my implant, maybe six months or so — that I did like certain kinds of music—without any practice at all. Over time, with some listening practice, I've gotten to the point where I enjoy music.

I'm not a professional musician and it's not something that's really central to my life but I enjoy music. For example, we're going to a concert tonight at the Kennedy Center and I obviously wouldn't do that unless I knew I could enjoy it.

SMAKA: Can this program be effective in demonstrating to friends and family what an implant user experiences or where he or she has difficulty?

SORKIN: Certainly. In the same way that you can share those reports with your therapist, it might be interesting for a family member to see the results or better yet, to watch the individual use the product and see what he or she is missing. It's always helpful to provide family and friends a way to understand the dynamics of their loved one's hearing loss, and this software is a tool that can certainly facilitate the family counseling process.

This might also provide a means for family members to provide input to the recipient on areas that may be troublesome and require more practice. It is important that suggestions be made in a positive, supportive manner.

SMAKA: You mentioned this is a program for adults and teens?

SORKIN: Yes. Both for people who have just had their implant activated and also for adults and teens who have more implant experience who want to work on specific listening challenges like hearing in noise or or perhaps hearing certain sounds. For example, someone might have difficulty distinguishing between the "head" and the "hold" sounds;they could then train on vowels. It's certainly an appropriate tool for an adult or teen that had a progressive loss and received an implant later or for people who have had a second side implanted and are now training the second, newly activated ear.

We don't recommend that this is product be used with young children learning language both because the vocabulary is beyond them but more importantly because habilitation for a young child with hearing loss emphasizes learning to listen into the natural process of language development—similar to the way typically hearing children learn.

SMAKA: What do you see as the benefits of Sound and WAY Beyond™?

SORKIN: I think the real benefit of Sound and WAY Beyond™ is that it provides the repetition and redundancy that is crucial to the effectiveness of training. It's really an intensive exposure to the areas that the individual is having difficulty with, and then being able to have the program progress from easier to harder tasks at at a pace that is right for the user, which is something that makes this product special. I think sometimes we get stuck in doing the easy things, and we don't push ourselves;Sound and WAY Beyond™ really pushes the user to achieve their maximum potential.

SMAKA: From everything you've described, it sounds like a systematic methodology where you build and build upon, as opposed to, "Well, go home and practice, and have your spouse read the newspaper, and close your eyes," and those kinds of things. Not that those aren't helpful exercises, too, but this ensures that you're continuing to build on your skills in a real systematic way.

SORKIN: Exactly. That's what I really like about the product and what makes it an especially powerful rehabilitation tool. It forces the user to progress to more difficult levels. The adaptive noise training module is especially challenging and is designed for an experienced CI user. It includes different kinds of background noise including speech babble, lowpass and white noise. In addition, as the user progresses in the basic modules, background noise is added replicating real life situations.

Some of them—I have difficulty doing. So, I can still benefit from practice with some of the modules as well.

SMAKA: How did the collaboration between Cochlear and the House Ear Institute come about?

SORKIN: Sound and WAY Beyond was initially developed based upon research that Qian-Jie Fu, Ph.D., has been doing for years. He lives and breathes this product. He's an amazing researcher who has been at House Ear Institute for more than ten years. So, it was a product that he had developed as a result of extensive research. He has even developed a version in Mandarin Chinese. We had previously offered an earlier version of the product. When Dr. Fu expanded and improved it, we collaborated with HEI to determine how we might re-launch the product and make it more available to the population that needed to have access to it. We conducted Beta testing with professionals and recipients.

This testing revealed that this was indeed a great product but that there were areas where we could improve the user's experience by providing better user instructions and support. We worked closely with the House Ear Institute over a period of almost a year to improve the product (including adding new modules) and support materials to optimize the user's experience. We revised the user guide, developed a Demo CD, and trained all of our staff on its use. They each have a copy of Sound and WAY Beyond on their computers.

I revised the user guide myself as I think articulating instructions is something I'm pretty good at because I've worked with so many professionals and cochlear implant recipients, and I'm a recipient myself. My son Colin joked with me about writing the user guide because I'm not the most technically savvy person in the world. I said, "But Colin, just think, if I can understand this user guide, then anybody can" and we had a good laugh about that.

SMAKA: [laughs]. How can cochlear implant recipients or professionals go about getting Sound and WAY Beyond?



SORKIN: New adult Nucleus™ recipients, those who were implanted after April 2009, automatically will receive it as part of their system kit. For people who were previously implanted with a Nucleus™ device when it wasn't part of the system kit, it's only $99. We hope that by making the product very accessible, many more recipients will benefit from the product and enjoy better outcomes with their cochlear implant.

SMAKA: Can people who are using other brands of cochlear implants go to your Web site and order Sound and WAY Beyond™?

SORKIN: Yes, they can. The price is $290 if they're not a Nucleus™ implant recipient because we have invested so much time and money into this project and we believe in its value. We have an exclusive arrangement with the House Ear Institute for distribution within the cochlear implant community.

SMAKA: From what you've described, it sounds like the software could be used in the clinical setting as well or at least the demo CD, to show patients how to use the product and how they can benefit from it.

SORKIN: Yes. The demo operates very similarly to the product but it only allows the user to complete five exercises per module. It also does not include the assessment and print reports functions.

We believe that Sound and WAY Beyond should be part of a comprehensive program of rehabilitation that every cochlear implant recipient should at least consider and be encouraged to pursue.

SMAKA: On another topic, we have an upcoming article on AudiologyOnline about the underutilization of cochlear implants in adults. Can you comment about this?

SORKIN: It's true, a small proportion of adults who could benefit from cochlear implants are actually receiving them. Audiologists play a key role in the awareness process. An audiologist can encourage appropriate individuals to explore a cochlear implant if the person has a severe to profound hearing loss and is not doing well with hearing aids. In my case, my audiologist urged me to explore an implant saying "Donna, I've done everything I can for you. I've put the most high tech hearing aids that I can on you and you're still not hearing well. I really think you should pursue a cochlear implant."

Her name is Susan Yaffe-Oziel and she currently practices audiology in Rockville, MD. She deserves special mention because she was the one who encouraged me to pursue a CI. As a result, she lost me as a patient but I have always considered her to be a caring and competent audiologist and a very good friend as well. She played a key role in improving the quality my life.

SMAKA: Donna, thanks for your time in discussing Sound and WAY Beyond and for sharing your thoughts on the other issues regarding cochlear implants. Have great day and enjoy the concert this evening.

SORKIN: Thank you, Carolyn. It was nice speaking with you.

References

Fu, Q.J. & Galvin, J.J.,III. (2008). Maximizing cochlear implant patients' performance with advanced speech training procedures. Hearing Research, 242, 198 - 208.

About Cochlear Americas

Cochlear Americas is the world's leader in advanced hearing technologies. Since launching the first multichannel cochlear implant system more than 25 years ago, Cochlear Limited and its U.S. headquarters have brought the miracle of sound to more than 180,000 hearing-impaired individuals across the globe. Cochlear Americas' state-of-the-art cochlear implant technology, based on extensive research and development at preeminent academic institutions, provides the ability to hear sound and better understand speech, enhancing both learning capabilities and quality of life for those with severe-to-profound hearing loss. Cochlear Americas also markets an implantable bone-anchored hearing device for treatment of conductive and mixed hearing loss, as well as single-sided deafness. For more information about Cochlear Americas' products, call the Cochlear Hotline at 800/458-4999 (Voice) or 800/483-3123 (TTY) or visit www.cochlearamericas.com