Now that you have your cochlear implant, and have become a proficient cyborg, wouldn’t you like to contribute to the advancement of the science somehow? By volunteering for experiments, you can help out in many ways, ranging from testing the Next Great Thing from your manufacturer to participating in groundbreaking experiments by independent researchers that may benefit us all. Don’t expect to leave the experiment with some new hardware or software – there is no immediate benefit to the participant.
The most practical type of testing involves trying out potential new products from your manufacturer. Before submitting hardware or software to regulatory agencies for approval, the manufacturer must conduct studies to demonstrate efficacy and safety. To do that, they need users to try things out, and that is where you come in. This isn’t my favorite kind of volunteer work, because you try out something that you will likely have to wait for regulatory approval before you can keep it. The thought of using something that enhances my hearing significantly, or using a slick new processor only to have it taken away, is somewhat distressing to me.
Of course, the manufacturers need to test all sorts of things, such as minor accessories, programming hardware and software, etc, that may not be as difficult to give up.
To volunteer for this type of testing, just contact the manufacturer of your cochlear implant, and indicate your desire. Of course there is no guarantee that the company will ask you to participate. Typically this type of testing involves you traveling to the company or a local office. The company should reimburse your travel expenses, and may give you an honorarium for your time.
I prefer to volunteer for research-oriented experiments, where scientists may experiment with novel excitation strategies or different electrode stimulation techniques. Or they may be evaluating some very basic performance metrics.
If you live close to a research center, you may be able to participate in experiments on an ongoing basis. You may go to the center for a couple of hours at a time over an extended period of months. Typically travel expenses are not reimbursed, but you may receive some compensation for your time. The researchers may modify the experiments depending on your performance.
I’ve participated in experiments testing the ability to ‘fuse’ sounds with my two implants, for example. I drew regions on the outline of a head where the sound appeared to me psychologically. That particular test was unusual in that it helped me right away as a recent bilateral user.
Other experiments may be more focused, and aimed at collecting a good amount of data. You may be asked to travel to the research location, or you may be able to show up a very small number of times to complete the experiment. Because the experiment is more well defined, it may even be somewhat automated. In an adaptive test, the experiment starts out easy, and gets progressively more difficult depending on your performance. The test generally stops when you get 50% of the answers correct. I find this type of test tiring, because it rapidly arrives at the point where I cannot answer reliably. But it is very useful, and gives the researchers a lot of data in a short amount of time.
For example, in a pitch discrimination test, you may be presented with beeps of different frequencies. If one is much higher than the other, it should be easy for you to pick out the higher one. But the tones will get closer together, making the test more challenging. At some point you will be very frustrated, and that is exactly the point the researchers are trying to find!
I’ve participated in a similar experiment where a vowel sound was played, and I had to click somewhere on a screen that most closely represented what I heard. The screen had sounds like ‘oo,’ ‘ee,’ ‘eh, ‘ah’ at different locations, and I was allowed to click in between them. This automated test took all day, and it was quite exhausting. But at the end of the day I felt like I had contributed to the advancement of cochlear implant science, and received some pocket money too!
Your audiologist may know of volunteer opportunities for you. But privacy laws may prevent anybody from contacting you without your written permission. Tell your audiologist that you would like to participate in research opportunities, and ask to sign a permission form to allow people to contact you.
Here is a list of researchers who have agreed to include their contact information on cochlearimplantHELP.com. Send an email to them if you would like to be considered as a participant in one of their studies. And if you know of another center looking for test subjects, let us know!
United States Food and Drug Administration
Clinical trials for implants, strategies, and new hardware from all manufacturers
NYU Laboratory for Translational Auditory Research
462 First Avenue, NBV-5E5, New York, NY 10016
Contact: Natalia Stupak, Annette Zeman
Royal National Throat Nose and Ear Cochlear Implant Programme
Royal National Throat, Nose & Ear Hospital
330-332 Grays Inn Road
London, WC1X 8DA
Contact: Wanda Aleksy