Drafting a Survey: What Would You Like to Know About Tinnitus Awareness and Fundraising?

[Markku]

We are working on a new survey

We want to gain more insight into the reasons why tinnitus patients get involved in fundraising or awareness raising, or what might hold them back from doing so.

Please give us your suggestions for questions to ask!

This thread is not for general comments

Please only post relevant survey question suggestions, to make our processing of the posts easier.
Once we have finished preparing the survey and launched it, we will announce it in a new thread, where also general commentary is welcome.

 

[Jack Straw]

Are you embarrassed to have tinnitus?

Are you afraid of people knowing you have tinnitus?

Do you feel like tinnitus is a weakness that people will judge you for?

The right answer to all of these should be "No" because this is a physical condition due to physical damage to our auditory system. You wouldn't feel embarrassed telling someone you can't go for a run because you have a broken leg. Why be embarrassed about this?

It is understandably different than a broken leg in the sense that people can't SEE the illness or problem making it harder to understand, but it doesn't mean it's not there and not a very real thing.

 

[david c]

To what extent do the main tinnitus charities in your country represent your viewpoint as a tinnitus sufferer?

To what extent do the main tinnitus charities in your country have your best interests at heart as a tinnitus sufferer?

With the answers being multiple choice (eg a little, a lot, not at all, don't know)

 

[JohnAdams]

Do you feel like our situation is hopeless and nothing can be done to benefit it?

 

[TuxedoCat]

@Markku


1) What made you decide to donate to tinnitus research?

2) Where would you expect to learn about opportunities for donating to tinnitus research?

I decided to donate because its very obvious that the medical profession knows very little about tinnitus. The so-called sound therapies like avoiding silence or using sound machines are ridiculous in this day of modern medicine. I keep questioning and challenging my healthcare providers. Its from them I learned that the circuity in the brain that is responsible for tinnitus is complicated, its viewed as a benign condition and all that's needed to live with tinnitus are hearing aids and masking devices. It puzzles me because an arthritic knee is a benign condition, yet in the US medicare pays for joint replacement based on improved quality of like as the outcome. Why isn't improved quality of life important for individuals with tinnitus? And why after learning that tinnitus originates in the brain and not the ear, is tinnitus still owned by ENTs?

Once I decided to donate, the question was where? Just handing money over to ATA for seed grants was not meaningful enough for me. As a donor I want to know more about the research projects and have a say in where my donations will be applied. I found it a real challenge to find and learn about other opportunities - no idea that Tinnitus Hub or TRI existed. A section about why we need to donate to research and an explanation of ATA, BTA, Tinnitus Hub, TRI from the perspective of how they support research in the information manual you are putting together would have been a huge help to me.

Hope this helps
TC

 

[TuxedoCat]

Thought of another question-

What factors are important when selecting an organization to receive your donation?

For me - the area of focus of the research (brain for me), global reach (does the research support the global population, will the organization select the best researcher for a study no matter where they are located), how much of the donation will go to research and how much to administration/overhead.

 

[Hazel]

1) What made you decide to donate to tinnitus research?

2) Where would you expect to learn about opportunities for donating to tinnitus research?

I decided to donate because its very obvious that the medical profession knows very little about tinnitus. The so-called sound therapies like avoiding silence or using sound machines are ridiculous in this day of modern medicine. I keep questioning and challenging my healthcare providers. Its from them I learned that the circuity in the brain that is responsible for tinnitus is complicated, its viewed as a benign condition and all that's needed to live with tinnitus are hearing aids and masking devices. It puzzles me because an arthritic knee is a benign condition, yet in the US medicare pays for joint replacement based on improved quality of like as the outcome. Why isn't improved quality of life important for individuals with tinnitus? And why after learning that tinnitus originates in the brain and not the ear, is tinnitus still owned by ENTs?

Once I decided to donate, the question was where? Just handing money over to ATA for seed grants was not meaningful enough for me. As a donor I want to know more about the research projects and have a say in where my donations will be applied. I found it a real challenge to find and learn about other opportunities - no idea that Tinnitus Hub or TRI existed. A section about why we need to donate to research and an explanation of ATA, BTA, Tinnitus Hub, TRI from the perspective of how they support research in the information manual you are putting together would have been a huge help to me.

Hope this helps
TC

Good idea, I think we'll make it a simple question asking whether people have enough information on donation options and where their money will go.

Thought of another question-

What factors are important when selecting an organization to receive your donation?

For me - the area of focus of the research (brain for me), global reach (does the research support the global population, will the organization select the best researcher for a study no matter where they are located), how much of the donation will go to research and how much to administration/overhead.

Good idea, but perhaps going into too much detail, we're trying to keep it light. Also, keep in mind not everyone necessarily wants to donate to research. People might also be interested in donations for awareness raising or tinnitus care.

 

[Hazel]

Are you embarrassed to have tinnitus?

Are you afraid of people knowing you have tinnitus?

Do you feel like tinnitus is a weakness that people will judge you for?

The right answer to all of these should be "No" because this is a physical condition due to physical damage to our auditory system. You wouldn't feel embarrassed telling someone you can't go for a run because you have a broken leg. Why be embarrassed about this?

It is understandably different than a broken leg in the sense that people can't SEE the illness or problem making it harder to understand, but it doesn't mean it's not there and not a very real thing.

Thanks! We'll definitely ask something along those lines, i.e. why people might be hesitant to share their tinnitus experiences within their social circle or publicly. As you might be aware, it's difficult to get people to come forward and tell their stories publicly, so more insight into the reasons behind that would be useful.

 

[Hazel]

To what extent do the main tinnitus charities in your country represent your viewpoint as a tinnitus sufferer?

To what extent do the main tinnitus charities in your country have your best interests at heart as a tinnitus sufferer?

With the answers being multiple choice (eg a little, a lot, not at all, don't know)

Good idea; we'll ask something about people's views on tinnitus associations.

 

[TuxedoCat]

Are you embarrassed to have tinnitus?

Are you afraid of people knowing you have tinnitus?

Do you feel like tinnitus is a weakness that people will judge you for?

These are great questions- could be framed as

To what extent does the fear of others knowing you have tinnitus keep you from participating in raising awareness?

 

[TuxedoCat]

Making a difference-

To what extent does the belief that it will not make a difference keep you from donating to research or participating in activities to raise awareness?

 

[Markku]

Making a difference-

To what extent does the belief that it will not make a difference keep you from donating to research or participating in activities to raise awareness?

This is a leading question, so we have included it in a non-leading way.

Thanks for all the great suggestions thus far!

Please keep them coming, everyone.

 

[glynis]

Members living near to each other who could raise awareness together, would that help volunteering for tinnitus awareness or prefer just to stay on the forum from a distance?

Would you donate if paid in through a bank and not having to open a PayPal account?

Would you donate if you felt your doctor or ENT really helped and not told just to live with it?

Would you donate towards a Tinnitus Telephone support line?

Would you donate to third world countries whom need help getting hearing aids?

Would you be willing to donate to Tinnitus Talk after being a member for 3 months to support the awareness work they do?

 

[TuxedoCat]

This is a leading question, so we have included it in a non-leading way.

You guys have a lot of expertise in this type of research, feel free to re-word or discard any of my questions!

 

[TuxedoCat]

Not sure best way to ask or get at this, but it might be interesting to know whether everyone with tinnitus thinks finding effective treatments or a cure is important and worth donating to.

For example they may have mild tinnitus and have habituated so spending time and money on a cure may not seem necessary or not even on their radar screen.

Maybe a 2 part question?
Rate your tinnitus - mild, moderate, severe.

Given your level of tinnitus, how important is it to research effective treatments leading to a cure - mildly important, moderately important or extremely important?

 

[TuxedoCat]

Ok think this is the last one -

If someone with tinnitus seeks out medical help and is told nothing can be done and learn to live with it, does that signal to the sufferer that donating to research or trying to raise awareness is equally futile?

BTW - that was my very first impression. Subsequently started to challenge healthcare providers, which they don't like. My ultimate challenge so far has been sending some of them the link to Rauschecker's fund raiser at Georgetown and asked them to consider donating!

 

[Tinniger]

My question:
Are tinnitus sufferers the appropriate people to participate in fundraising?

Do you think that tinnitus research should be fed from sources other than individual donations, e.g., science foundations?

 

[Starthrower]

We want to gain more insight into the reasons why tinnitus patients get involved in fundraising or awareness raising, or what might hold them back from doing so.

Because I have a personal attachment towards the cause. I like supporting people's hard efforts like @Ed209.
It makes me feel like a part of the solution when people are suffering. That is why my husband and I will continue to donate towards Tinnitus Talk fundraisers.

What held me back for quite some time? The indifference feelings towards myself and my husband by the ATA after years and hundreds of thousands of dollars donated for a cause. It isn't why or what we expected because of the donation. It is the fact that as the years passed by we were forgotten.

Another ATA member back then raised 300k climbing Mt. Everest for donations towards a cure. That is never mentioned by the ATA anymore either.

Organizations need to keep in contact with such donors and not to ask for more money. Just to say thank you and we remember the difference you made. Or simply how are you doing these days?

Simplicity of organizations being aware of past donors and not letting them fade away.

That is what has kept my husband and I from any further ATA donations.

Good idea, I think we'll make it a simple question asking whether people have enough information on donation options and where their money will go.

And ask them if they feel they were properly thanked for any donation and it that made/would make a difference.
Keep donors on a list to contact once or twice a year just to say we are thinking of you and your donation made a difference. Don't ask for more donations. That will happen naturally.

Communication.

Like @Greg Sacramento said, we are more emotionally inclined to donate towards patient care funds.

 

[Ed209]

• Does the risk of losing your anonymity put you off donating?
• Are you concerned about your details being stolen/fraud?
• Does habituation factor into your decision to donate?
• Do you believe there will be a cure in your lifetime?
• Would you be more likely to donate if you knew the details of the project your money was going towards?
• Do you believe that donating towards research is a waste of time?
• Are you in a position where you want to donate but can't for some reason?
• Do you trust that the researchers would use your money productively?
• Would project updates that keep you in the loop make donating more appealing?
• Can you afford to donate?


These are questions that delve deeper into a person's character.

• Would you donate if only donors were going to have access to the cure, if one was discovered?
• Would you donate if there was a chance of you winning a reward of some kind?
• Would you donate if you were younger?
• Would you donate if big-named celebrities started giving to tinnitus research?
• Would you be more likely to donate if tinnitus became big news in the media?

 

[RCP1]

Do you feel that donating is a fruitless exercise? That the cure for tinnitus is so far off that it's hard to get enthusiastic about it.

Are you willing to sacrifice a little now so generations in the future will benefit?

 

[MichaelF6161]

These are a lot of great questions. I'm new to the party, but yes, I have been thinking about where I'd like to put my money, and what would affect that decision.

I'm a bit of a financial skeptic when it comes to donating, to any cause. So, transparency in where your money goes is very important to me.

"Would you consider donating to research if their operating financials were posted online for you to access with a login code?"

...and along the lines to @Ed209's point;

"Would you consider donating, if you were granted priority access to the therapy based on you being a donor (maybe at a certain monetary cutoff)?"

@Starthrower also brings up the important point of acknowledgement and follow up. This is a consistent problem with much fundraising efforts, outside of them asking for more money each time. So maybe;

"Would you consider donating to a cause if your efforts were regularly recognized by the organization you are supporting?"

 

[MichaelF6161]

It puzzles me because an arthritic knee is a benign condition, yet in the US medicare pays for joint replacement based on improved quality of like as the outcome. Why isn't improved quality of life important for individuals with tinnitus? And why after learning that tinnitus originates in the brain and not the ear, is tinnitus still owned by ENTs?

BAM!
@TuxedoCat

Absolutely just nailed it. I'll tell you the difference; the arthritic knee has a visible component to it. Patients start to limp, they get a cane, a walker, etc. We don't appear to have any outward suffering, yet we are.
My experience with ENT's is exactly the same as yours, I'm sure. Unless there is a physical, medical reason or known correctable etiology for your tinnitus, there is absolutely no reason to see an ENT. They are clearly NOT trained in tinnitus management or therapies.

If anything, this should be in the neurologist field of expertise. It's a brain disorder, and that is where the cure lies.

Subsequently started to challenge healthcare providers, which they don't like

.. and they also don't like it when you come to the appointment with them with the latest research and papers, and due to their arrogance, they don't want to talk about it because they clearly are uneducated and unprepared.

Challenging the "experts", even in things like research fundraising, is important in directing where those research dollars will eventually go.

I know this sounds off topic, but these are all things that we patients think about when wanting to do something positive with the money we have. So maybe;

"Would you be more willing to donate to tinnitus research if you knew the research is appropriately focused on the latest clinical data that is working towards effective and tangible therapies/cure?"

Maybe others like TuxedoCat think sound therapies ARE a waste of time, and want research to be directed towards brain chemistry or other actions of mechanism. Are people more willing to donate to a cause that represents a true cure that may take more time (say, 5-10 years), or are they more willing to donate to things like habituation mechanisms that will be available in the near-term (1-3 years)?

Just kicking around ideas...

 

[TuxedoCat]

Maybe others like TuxedoCat think sound therapies ARE a waste of time, and want research to be directed towards brain chemistry or other actions of mechanism. Are people more willing to donate to a cause that represents a true cure that may take more time (say, 5-10 years), or are they more willing to donate to things like habituation mechanisms that will be available in the near-term (1-3 years)?

Just kicking around ideas...

I think you are onto something. It suggests that a donor wants to know enough about the cause or the research to which they are being asked to donate to make a determination of where it fits in their value structure. If I am a donor with $100 trying to decide whether to donate to cure in 5-10 years vs habituation in 1-3 years, I might choose one over the other or I might say well, both are important, but a cure is more important to me so I'll donate $75 to that and $25 to habituation because that's less important to me, but it's important to others who may be less affected by tinnitus than I am.

So for myself, I will not donate unless I have enough information on which to make a value judgement.

It does occur to me that all this need to evaluate and make judgements about money may be a form of control, but when you have tinnitus and no longer feel in control it's a reasonable substitute.

 

[MichaelF6161]

@TuxedoCat
Agree whole heartedly with your logic and the value system matching. I also think it is important to distinguish the need of each organization that is looking for research dollars.

I was just on a site for Lauer Tinnitus Research Center in Boston, MA. They are looking at some interesting angles and ideas to address a cure for this horrible affliction. There is a "Make A Gift" button on their main page. If you click on that, it takes you to a payment method page and acknowledgement information.

That's all fine and well, but I have no information about your organization. Is your budget $10M for a fiscal year, or $100K? How bad do they need funding? Yes, to me need it critical to my decision. Is the $100K organization more worthy of my dollars than the $10M one?? Maybe, but I need more information. How much $$$ goes to the actual research or to the salary of the scientist/physicians involved? Maybe this information is available on their site or if I call them, but I think it should be readily available if you want my money.

Many organizations don't want to disclose this information. They feel it is too intrusive. I don't and I bet many more people would be willing to give if they had this full disclosure.

Let's put it this way; if a research center came to you and said, "Look, we think we are really, really close to something significant. We need $500K to buy this piece of equipment, or run this final trial, and after that we are submitting for approval, etc."

I would be more willing to give them money, than some research center at some major medical center in an expensive urban area that has been chugging along for 20 years and getting little to no results to T sufferers. Chances are that money is paying operating expenses primarily and NOT research.

That is not what I want to fund. Call me selfish, but I want a damn cure..

 

[TuxedoCat]

The Lauer Center is a bit of a mystery. A couple of year ago, they had an interdisciplinary conference - the link to the videos are on their website. Dan Polley gave a presentation about the state of tinnitus research. He said things which made a lot of sense to me so I put my email on their list to receive updates. Guess what - I have never received a thing from them. Then the Peabody Labs which includes the Lauer Tinnitus Research Center received 20 million dollars from a donor.

I asked the American Tinnitus Association (ATA) if they knew if any progress was being made. ATA was aware of the Lauer Center but not the 20 million dollar grant, they said they would look into it and once again, I never heard anything back from ATA. Leads me to believe research at the Lauer Center is inactive.

When it comes to donating, ATA is another mystery to me. I like the fact that they are up front that they give out seed grants and don't limit the grants to just US recipients. But as far as the way ATA communicates with its members about its other activities - it's just Facebook mentality. Pictures of Torryn Brazell and company at the University of Miami Tinnitus Clinic, Torryn Brazell with Dr. Zeng, Torryn Brazell goes to England to speak at BTA's Expo.

There's no substance - what are they saying, how was it received and what is coming out of these efforts? Couple that with a two star rating (needs improvement) on Charity Navigator and any desire to give melts away. I asked ATA about their two star rating, here's the reply which makes me think that ATA is a tad dysfunctional:

The ATA is actively engaging in increasing our star rating. One of the reasons for the low star rating is that the organization had not uploaded their 990, audit management letter, or an annual report. These increase ratings. There are other areas that also bring down ratings, many of which relate to the lack of information on Charity Navigator's site, rather than finances. Thank you for asking and please know that this is definitely a priority, and that it takes a year or two for star ratings to increase.
​

So all of that is a long way of saying that another question for the survey is -
In general, is the amount of information that organizations provide adequate for you to make a decision to donate?

 

[TuxedoCat]

Do you feel that donating is a fruitless exercise? That the cure for tinnitus is so far off that it's hard to get enthusiastic about it.

Do you feel like our situation is hopeless and nothing can be done to benefit it?

To what extent does the belief that it will not make a difference keep you from donating to research or participating in activities to raise awareness?

I wonder if these reasons for not donating correlate with the length of time someone has lived with tinnitus.

As time passes and there is no effective treatment and no cure, does someone become less likely to donate?

Because they have never experienced a benefit from any of the research in all their tinnitus years they arrive at a point where they think research is useless. (Or, maybe the converse is true, the longer someone has had tinnitus they become more willing to donate to research.)

Again, not sure how you get at this?

Would you ask in 2 parts -

How long have you had tinnitus?

Has your willingness to donate to researched changed over time?
More willing
No different
Less willing

 

[Hazel]

I wonder if these reasons for not donating correlate with the length of time someone has lived with tinnitus.

As time passes and there is no effective treatment and no cure, does someone become less likely to donate?

Because they have never experienced a benefit from any of the research in all their tinnitus years they arrive at a point where they think research is useless. (Or, maybe the converse is true, the longer someone has had tinnitus they become more willing to donate to research.)

Again, not sure how you get at this?

Would you ask in 2 parts -

How long have you had tinnitus?

Has your willingness to donate to researched changed over time?
More willing
No different
Less willing

Thanks @TuxedoCat!

I think we'll be able to assess what you're interested in. The way we would do it is to ask respondents how long they've had tinnitus for, and also ask them several questions about donating (have you donated? why not? will you donate in future?). We can then correlate the #years with tinnitus with answers to other questions to test your hypothesis.

I also want to thank everyone who provided suggestions. Many of them have been incorporated. We will launch the survey soon. This thread will remain open for at least a few more days and further suggestions will be incorporated until we lock the thread.

 

[Tinniger]

I just have a very special idea about fundraising.

How would it be to promote a legacy for tinnitus-associated research in case of death?

In my experience, people are much more generous when they are dead.

The question:
Could you imagine making a legacy for tinnitus-associated research when you die?

 

[Tinniger]

Next question:

Would it increase your willingness to donate if your donation was not used for research, but to increase public awareness of tinnitus?

 

[JohnAdams]

Why won't tinnitus associations raise more awareness about emerging technology that may potentially totally cure us?