This is the first of the users that I have asked to share their experiences and their ideas or aspirations for the future provision of hearing instruments. It is interesting that Stein would like the ability to tweak and fine tune his aids, but also wants a hearing care professional involved in the process. He wants that involvement but on his terms. Stein is Norwegian and is a committed advocate, Stein’s first language is of course Norwegian so please forgive him any oddities in structure.
Stein Thomassen sometimes call himself hearing impaired tinnitus preacher. He works in Norway as knowledge mediator towards the uneducated public. Since 2006 he has conducted lots of courses on tinnitus and reduced sound tolerance. Lately he has moved into hearing loss and hearing instruments as well.
He runs horetrobbel.no which is an information blog on hearing loss, and tinnitustips.no which is a TRT and CBT friendly web site on tinnitus and sound tolerance. Also, he has written Selvhjelp ved tinnitus, a book on managing bothersome tinnitus, and is the editor of Høreluren, a members’ magazine of the Oslo chapter of the Norwegian association of hearing impaired.
Stein has a cookie-bite hearing loss now progressed to a ski jump.
Contact info: http://horetrobbel.no/kontakt/
What does the fitter say?
Do do do do do youuuu hear ok?
Since Easter I have been programming my hearing aids myself. Gone are 13 years in the hands of (in my case) amateurish professional fitters. Only one of the 13 I have encountered did verify the fitting (but knew little of the options in the fitting software). The 13th fitter made me boil over. I wanted maximum speech understanding coupled with the absense of unpleasant tonal balance. So I decided not to waste my time anymore. I landed on self programming, very much to my satisfaction – and to the hearing care professionals’ dissatisfaction.
Now I can refit my aids anytime I like. No need to wait a month or two for the next correction. No making a fool of myself at work during the waiting period whenever the last fitting was a misfit. If I need to, I can reprogram a dozen times during a single day, and verify the usability after each reprogramming. And I have almost entirely overcome the communication barrier between the hearing professional and myself 😉
During 13 years I have had 13 different professionals programming my aids. Why so many? No one impressed me and made me feel the aids were correctly adjusted. So I went for a new one each time. That’s my way of doing it. By education I am an electronic engineer trained in both analog and digital electronics. Too often I felt the hearing professionals had inadequate knowledge of malfunctioning hearing, the workings of modern aids (which are advanced devices), and the options of today’s complex fitting software. And always (except once) there was no verifying of the fitting. Just the plain D O – Y O U – H E A R – M E – A L L – R I G H T – N O W ? in a slow and clear voice in a deadly silent office. And I thought to myself; what a wonderful world. Hey – no, I did NOT think that. My thougts were more like; does he/she really understand what it is all about?
Guess what is on my wish list for X-mas? A truly professional service by a knowledable audiologist. Verification of speech understanding and listening comfort in various environments. And time for fine tuning. Before I leave for home. Additionally I wish for an easy to use fine tuning option for the interested wearers to use.
For this to happen smoothly I believe the majority of users have to be educated in identifying listening problems and in communicating the problems. That is why my wish list also contains an easyly understood multimedia publication for the users to study before they enter the fitting room.
Thank you for this interesting view from a consumer of hearing aids.
I am Danish and very much agree with Stein from Norway, that as users of hearing instruments there is a huge lack in communication between us – the users – and the professionals fitting our hearing aids.
I have had 13 or more people fitting my hearing aids and this is not because I ask for a different person every time. It is because this is how our system works in Denmark. It is a matter of filling in a certain appointment in the hospital calendar.
And they do not all understand my hearing aids, nor do they all understand the software to use when fitting my hearing aids.
Once I found myself telling the audiologist which keys to press on the computer keyboard (in order to save time) – it didn’t at all make it any easier, because now we were suddenly in doubt who set the rules for our conversation.
These professionals have only 20 minutes for each patient.. this is very short time to sort out the detailed auditive needs for a person, they don’t really know.
Twice has it happened to me that I came out with my hearing aid programs in a different order – and both times had I stated: please be aware of the order of my programs and how I like them in order to one another.. and I was told: “yes yes, that is no problem”. But it was, and I needed to make a new appointment to have it sorted out.
And when I tell you about these complications, please do also note that I am not at all as far deep in the details of the correct sound as Stein expresses his needs for above…
A couple of things I should like we were able to do ourselves is:
activating/deactivating tele coils and volume control
rating the tele coil according to microphone
both within certain limits
We could do lots of these things ourselves via the internet and just being online with our audiologist. It would save us driving the long distances to the clinic, it would save me from being off work to prepare for trying out a new Assistive Listening Device
And above all it would not make me a patient in these situations.
I am lucky – I work as a hearing consultant and now I have a colleague working as an audiologist and she knows me, when she helps me fitting my hearing aids, I get the sound I benefit from and this is what keeps me still working full time.
Having tried the periods with wrong fitted hearing aids and having to wait for another appointment when sound really hurts in my ears.. I dread the day when I stop working, because I am not at all sure I can get the sound I feel comfortable with and in.
To me it is absolutely clear why there is much disappointment and complaint among people with hearing loss, because this is a difficult area and from personal experience and my work I know, that there are so many things we are still very unsure about, when it comes to hearing and hearing loss and the use and benefits from sound.
Aida, thank you for responding and sharing both your experience and indeed what you would like to see in the future. I have no experience of the Danish market and do not feel it is my place as a professional to comment on it.
However, I feel that you consider that you have had a rough time. I feel from what you have said and correct me if I am wrong. That you would like a more sustained and deeper relationship with your audiologist. In the future you would like to have access to the changing of many settings on your instruments.
However, whilst that happens, you would like to continue the relationship with an Audiologist for verification, support and assistance. You would like that relationship to be with as few Audiologists as possible in order that you can maintain that relationship. Would that synopsise your general point of view?
Thank you for your sum’ups, Geoffrey.
You are quite right understanding what I feel about all this.
And yes, tele health would be fine – via computer or some app .. whichever.
We would also like remote controls to be apps in our touch phones 🙂
I am lucky to work in this field, no doubt having very good colleagues helping me out every now and again.
I still believe that professionals in the clinics are equally well qualified, but their everyday work is very tight scheduled, which doesn’t always work with fitting hearing aids – HA.
I should think that after all we – with hearing loss – can be categorized in different groups and a lot of us would be able to (re)adjust our hearing aids within certain limits ourselves. Some will still need to show up at the clinic for personal assistance.
But… we do know from the CI-area, that many CI-users have the same technician tuning their Cochlear Implants, and as soon as they see a different technician at the very same clinic, they do not get what they need.
I have no doubts that we with HA have been left out of the focus for a long time due to CIs, and many of us need exactly the same – an audiologist who knows us deeply as to our personal preferences on hearing, sound and audiology.
Then, the Scandinavian market is overall very much the same – but within Scandinavian countries we do of course know the differences – .. the main thing is that audiological treatment in the Scandinavian countries is covered by national health insurance mostly (if not, you may pay a share of the cost) and so we may as consumers merely be told what is good for us and be given the choice ..
However, I understand from many other countries that it is not just possible to try out different HA, and the difficulties may be, that this is much more difficult than trying out driving a new car eg. Our experiences aren’t that strong on hearing, although it is an everyday sense to use. Normal hearing people tend to discuss the quality of sound in music and know a lot that way around. But people with hearing loss have much experience too, although not much has been worded..
Interesting topic here and if even we can make views on humanity in audiological treatment adjust to the time, we are living in, that would be just FANTASTIC 😀
It sounds like both you the Patient and the Audiologist have a hard time. They are put under pressure by the system and you are not seeing results. Have your advocate groups tried to engage audiologist associations in dialogue?
In the UK and Ireland there is public provision of hearing aids that is open to most people. There is a great strain on that system in both countries but audiological services have improved dramatically in the last few years.
There is also a large private market which is catered to by private practices. Within public provision here there would be certainly elements of the problems you yourself have faced. The private industry is less problematic because it is a commercial enterprise. Companies within the private industry also face stiff competition.
So it is important that they look after their Patients as well as possible. But even within the private industry we have unhappy Patients. It is making us look clearly at ourselves and what we offer. This pressure has ensured that the private industry is moving towards best practice. It is an imperative that we ensure the Patient is happy in order that we survive.
Sorry Aida, I forgot to say that it seems you would also like some form of telehealth. Such as remote fine tuning undertaken by your Audiologist. Is that also correct?
Agree with Aïda – I too would certainly make use of remote fitting 🙂
To both Stein and Aida, what if?
You went to an audiologist for testing
He or she recommended a set of instruments
You were then given the ability to tweak your fit broken down into something like a lower bass tweak, an upper bass tweak, a mid range tweak, a lower treble tweak and a higher treble tweak
You did so over a period of time and then went back to verify what you had done and to ensure it was safe
Occasional sessions followed either in person or remotely always to ensure that you were not endangering yourself and the instruments were working fine
With occasional face to face fittings instigated by you or the audiologist to cover any situations beyond the ability of remote sessions
The question though for me is not just whether you would like that, would others?
Can you see that as a model for the future?
Although you don’t pay at the minute, is that a model you would consider paying for?
I am of the opinion that my hearing loss and what I need according to that should be covered by my national health insurance .. I pay taxes as well as everyone else and I am happy that my taxes will help someone else covered by national health insurance – hearing loss, hips, heart attack, whatever.
Still… we do have private clinics also in Denmark, and I don’t mind that at all.. people feel differently about where they want to have their service and treatment.
But I think for private clinics we can look into car industries and how things are done there.
I would prefer to receive a package included in my audiological treatment.
(like I do when I buy a car – so much is included in service).
Not something that I would have to pay extra for in case things don’t work for me.. because I might feel guilty because it is not working and I ought to have said so in the beginning.. But many times we don’t know in the beginning because these things take time.
But… things are programmed already from the companies according to fitting the HAs in the clinics. I should think this is a piece of cake building up a program through which I – a consumer/user – can adjust my own audiological needs within different lower treble or higher treble tweaks.
I am in my mid-fifties – and talking to my children – grown up now – they know about these things, this is the future population needing to be communicated with at a face-to-face level. Their knowledge is there already.
Stein and I are in some aspects ahead of our own generation – no doubt.
But according to using phones for remote controls and working via apps …
I know others who would be capable doing that.
Our problem is, that we are not supposed to know about our own situation.
Others take over, no matter if this is a public clinic or somebody in a private clinic.
This goes even for choice of HA – some know very well what they would like, and then they are told they cannot have that .. even in privat clinics.
As such I don’t see it as a service I should pay (extra) for.
I see this as a way I can help cutting down the waiting list for audiological treatment at the same time as I grow my own independency in this field.
And… I am NOT – as Stein – an educated engineer, I am sure I should prefer this individual responsibility at a different level from Steins – and that should be acceptable because this is where my knowledge is.
(my previous respond does not show… how come?)
That is fine and it fits into the accepted service within your country. You pay quite high taxation for the services that are provided to you. I more asked the question to assess the value you put in the process I outlined.
Inclusion has many edges ..
But from what I hear from people who have had their audiological treatment from a private clinic they are no way better off than we – the lot – who go to public clinics at the hospitals.
If you get more for paying more, I understand that.
This is not the case in our country.
We pay high taxes and so we also get high qualified treatment from public clinics.
I just see – I am a professional myself in all this – that this area is difficult.
As to your comment on the future generation, you are correct. You are the leading edge of that generation. A generation who will demand more, who will demand inclusion in the process from beginning to end. Who will want to choose their solution and the process that is included in it.
sorry – NOW my previous response shows.. and that is fine 🙂
As an audiologist in the USA, I see many people who have gone to other audiologists who don’t know how to program hearing aids correctly. I’m not quite sure what methods they’re using for fitting, but it seems to be “how does this sound” or some variation as Stein stated. My advice is to shop around (ask friends who are happy with their aids who their provider is, etc.) until you find someone who knows what they’re doing. Make sure they’re using some form of objective verification measures, such as real ear/speech mapping.
Hearing aid technology is advancing to the point where minor adjustments can be made by the end user, which I feel is beneficial as It can help people get the most from their hearing aids. However, I do feel that an experienced professional needs to set up the hearing aids and adjustment options initially. There are exciting advancements in hearing aid technology coming all the time, and it’ll be interesting to see what’s going to be available in the future.
How about this (Something I proposed right after they first introduced BlueTooth compatible hearing aids:
Most hearing aid manufacturer softwares come with “fitting wizards” to assist the audiologist when they are at a loss as to how to proceed. I actually rarely use this because my training has provided me with a comfortable level of understanding when a patient comes in for adjustments. I actually think these wizards are for audiologists and dispensers who HAVEN’T had the proper training and want to let the software do the thinking for them (which is sad).
However, I could see the creation of apps for smart phones that function like these wizards and allow the patient a modicum of control. The wizards would present a list of specific issues based on sound type (conversational speech, the user’s speech, noise, music, etc.) and the complaint (speech not clear enough, loudness, sound quality, tinniness, hollowness, etc.) and then provide the patient with a “do it” button. They would be able to adjust the hearing aids with certain limitations (i.e. +/- 6dB from the audiologist-programmed settings). Anything beyond this they should return to the hearing professional for additional assistance.
They should also have a “reset” button in case they really mess things up and want to return to the professional’s setting.
I have proposed this concept for about five years, and don’t think it is an “if”, but a “when” it’s going to happen. Putting the control into the hands of the end-user is advantageous to all involved. As an audiologist, I spend about 1/3 of my time fine-tuning hearing aids, whether it is in the initial trial period or a long-term follow-up. If I could reduce this time, it would allow me to spend more time with new evaluations and fittings, thus increasing my volume and efficiency.
Since time is money, any increase in volume and efficiency would translate to reduced retail pricing. Likewise, and increase in volume would translate to higher discounts from the manufacturer, further improving the retail price. Reducing retail price reduces one reason for consumer resistance to hearing amplification. It’s a winning situation for all involved.
Unitron introduced a mild version of this about five years ago with the “Yuu” product, but it was remote based rather than Smart Phone. The remote had the traditional controls for volume and program selection, but also had a control for comfort and clarity. The patient could adjust more than just volume up or down, but have an effect on the frequency response and maximum output. The big difference, however, was the addition of the “LearNow” button. If the patient manually adjusted the settings to such a degree that they liked the results better than the professionally-set ones, by hitting the magic green button on the remote, the aids would remember this upon start-up (with a +/- 6dB limit like I had suggested). This was great for patients who had trouble returning for fine-tuning. Unitron has carried this forward in their Passport, Quantum, and Quantum2 generations of products, and I don’t believe any other manufacturer has followed suit.
An app-based system, however, who probably be a better interface and allow even more flexibility. I’m looking forward to it.
What you are proposing makes perfect sense. It would give real freedom to users within safe parameters. Aida and Stein, would a facility such as this suffice for the general user?
Agree, Scot’s idea is good, indeed. For a lot of general users this will be enough. However, I thing many general users would also welcome the possibility of controlling features like spike supression (e.g. Phonak SoundRelax), echo canceling, uncomfortable level, etc
Yep, my concept for the app would include access to these features, but the interface would be simplified, as in…
1. Speech ==> not sufficiently clear (app would use SoundRecover and / or a high frequency increase as the solution.
2. Own voice ==> echoes (app would use a reduction in loud amplification for high frequencies)
3. General sound ==> reverberates / echoes (e.g. gymnasium) (app would increase echoBlock feature)
4. Loud Sounds ==> Too Loud (app would reduce gain for loud inputs and maximum power input)
This sounds perfect, and I like the expression ‘modicum of control’ because we cannot all handle the same things.
As for all the wizards it really is sad, that adjusting hearing instruments is thought as something where communication is not necessary in the process.
I fear that many audiologists over time will loose the knowledge on communicating with consumers/patients due to all the software the companies let follow each type of HA, and if we cannot be computer-adjusted and tuned, then we cannot have it as comfortable as we need to live a comfortable way.
I have no doubt that users/consumers will need to be categorized as to what we can manage – and there will still be a group that will need personal assistance in every way of fitting their hearing aids.
For instance, world wide it is known that the tele coil is not sufficiently activated in HAs, people may have had their HA for a couple of years before realizing that there is a tele coil in the HA and then need to go to the clinic to have it activated – not knowing if it will be of any use BUT realizing that if it is not of any use they may have to go back to the clinic again to have it deactivated.
Activating/Deactivating a tele coil is no way dangerous to any setting in a HA and the rating according to the microphone is also easily done.. This, I imagine, might well be one of the first things to set free for users/consumers to take responsibility on ourselves.
I quite agree with Stein about many other options, that e.g. Stein will be able to manage, and for that particular category of users these things should be set free – not just because the sound quality will be better for that one person but also because he needs not play the role of a (an unsatisfied) patient during fitting and adjusting sessions, which is an important issue living with hearing loss and dealing with HA every day.
I have met quite a few people who desperately wanted a way of controlling max gain in the treble region without affecting gain for soft sounds in this region. So I think there is a real demand for such a feature.
I have found this discussion really interesting.
It would seem that none of the audiologists seen by Stein and Aida have undertaken any speech-in-quiet/speech-in-noise assessments at the initial examination, hearing aid fitting or at any subsequent appointment, despite conversation and social interaction being the primary reason most people use hearing amplification.
Clinical time in statutory hearing aid provision may be an issue, as well as availability of the software, and having worked in both the NHS and private sectors here in the UK, i can understand the constraints placed on the staff.
Auditory training software is also available to buy to habitutise to listening through hearing aids.
Being able to personalise and control the output of the hearing aid should certainly be possible within a few years for the tech savvy user, (who, lets be honest, will be the dominant user group within a few years as we all age and are used to being able to get what we want online and from a small handheld device).
Whether this level of technology would be provided free on loan from statutory services is doubtful in the UK as the political pressure is going in a different direction.
Good observation, I think if the general market moves towards that type of model, the Public Health Service will follow. Perhaps a little later as is so often the case.
Stein and Aida’s experiences is within a universal public health care service in the Nordic countries. As you have so rightly pointed out, there are constraints within that type of service. However, as you have mentioned, quicksin and speech tests which are accepted as best practice, have not been undertaken.
I would assume that this is because of time constraints within that system.