Community Helping Identify Research Priorities (CHIRP)

[Hazel]

Dearest Tinnitus Talk members and visitors,

Six months ago, we asked you, the community, how you would like to be involved in tinnitus research. We conducted a poll, and the results indicated that a majority of you want to be involved in helping IDENTIFY RESEARCH PRIORITIES. Perhaps the underlying sentiment here is to steer funding and attention towards research projects that could lead to a cure, or otherwise just projects you can believe in because they might improve your life.

Well, you answered, and we listened. Since that time, lots has been happening behind the scenes. We have arranged calls with leading researchers and community allies, brainstorming ways to form a bridge between the patients and researchers... and... figure out a way to begin involving you, the community, and your input and opinions to shine a light on new and upcoming tinnitus research. We are also hoping to get a little funding that could make this project even more impactful, for instance by revamping this site with new online tools to facilitate direct interaction between researchers and the tinnitus community.

Right now, we are actively exploring potential ways to involve the community here at Tinnitus Talk in steering research priorities and weighing in on what you think is the most promising and impactful tinnitus-related research. I think I speak for us all when I say the goal is a cure... But reaching this goal might require many different types of research from different disciplines (see here for instance).

In order to make progress and advance the pace of research – the right research – we want to find a way to unite as a community and help make our voices heard. What does that mean? Once again, we want you to start the conversation, and answer the question: How would YOU like to help identify research priorities?

Do you want to open a vote on the latest research publications? Do you want to have a free-for-all discussion on each research project? Do you want to have researchers "pitch" their ideas, or present their results, to the forum, and let them make their case? These are brainstorming ideas, not promises at this point. However, I want to make it clear that we have reached out to a significant number of leading tinnitus researchers, who are now following this website, and this thread will be emailed directly to them. We are listening. They are listening. And...

Now it's your turn to help us brainstorm, give us your opinion, and answer the question: How do you want to help IDENTIFY RESEARCH PRIORITIES and potentially "steer" tinnitus funding in 2020 and beyond? There is no right or wrong answer. You can be serious, silly, or scientific in what you propose.

This thread will remain open for 30 days – at which point we will take the responses and see what sort of practical pilot project we can begin to start harnessing the energy here on Tinnitus Talk and begin "steering" research priorities and the community's attention.

Hoping to hear from you all soon!

 

[urgentresearch]

MARCH MADNESS!!!
... but for tinnitus researchers/projects instead of college basketball games... and not just March... every month... with sticky posts and forum badges instead of actual trophies...

ROBOT WARS!!!
... but for tinnitus researchers/projects head-to-head battles instead of robot battles... and the battle arena will be forum discussion threads, semi-flamewars, and heated discussions...

AMERICAN IDOL!!!
... but the contestants don't sing, because instead of music we are talking about fresh tinnitus research papers and/or grant proposals... with the Tinnitus Talk community as voters/judges...

HAD TO START SOMEWHERE!!!
No such thing as a bad idea, folks. On a more serious note, I'll be brainstorming more this weekend... 30 days, hmm... very curious to see how this thread will evolve and what other people have to say... good things happen when ideas cross paths...

 

[JohnAdams]

I'm in love!

 

[ChrisBoyMonkey]

Now it's your turn to help us brainstorm, give us your opinion, and answer the question: How do you want to help IDENTIFY RESEARCH PRIORITIES and potentially "steer" tinnitus funding in 2020 and beyond? There is no right or wrong answer. You can be serious, silly, or scientific in what you propose.

I like the open vote idea with a little bit of pitch. They could just have a short pitch like summary of what the research will be, how promising it looks or how it could affect us, and we simply vote on what we prefer to be prioritized.

 

[urgentresearch]

I like the open vote idea with a little bit of pitch. They could just have a short pitch like summary of what the research will be, how promising it looks or how it could affect us, and we simply vote on what we prefer to be prioritized.

Awesome.

I'm curious, what you have in mind. Would the researchers themselves be responsible for the pitch, or would Tinnitus Talk members help "summarize" or present the pitch. Or both??

I think it's a cool idea, wondering what the format would look like.

And I wonder if some sort of pitch-friendly Q&A template for researchers... to make it easier for them to answer pressing questions (e.g. "what's the most promising/exciting part of your latest work??" or "how is this research a potential game-changer / leap towards a cure??", etc...).... might get the research community more involved and bridge that communication & relevance gap.

What do you think?

Oh and I like your idea of a hybrid... a cross between a pitch + open vote. Either one on its own might be a bit loose, but combined... I can see how the research priorities would reach the community and involve "steering" in a much more effective way.

 

[urgentresearch]

@Contrast get over here
@GSC chime in
@threefirefour memes plz

 

[ChrisBoyMonkey]

some sort of pitch-friendly Q&A template for researchers... to make it easier for them to answer pressing questions (e.g. "what's the most promising/exciting part of your latest work??" or "how is this research a potential game-changer / leap towards a cure??", etc...).... might get the research community more involved and bridge that communication & relevance gap.

That is exactly what I was thinking. We gotta make it so that it doesn't take up too much of the researchers' time, but ultimately they should be doing their pitch; someone else doing it for them probably wouldn't even know where to start without getting the info from them anyways. Then we just vote on their pitches.

 

[MattS]

I'm wondering if we can get a bit more clarification regarding how our priorities may get turned into action items.

@ChrisBoyMonkey's idea seems to suggest that researchers will pitch ideas that we then get to choose between. But wouldn't this require that we have funds to support the project with?

My understanding was that we were to be brainstorming ways to get into the game of steering research priorities, rather than actually selecting them. Is that right?

Assuming the above to be true, some ideas:

* Money talks, sadly: so the best way is definitely to be able to support the research we want to happen.

* Create a dataset that researchers will find valuable: If Tinnitus Talk has possession of a high-quality, comprehensive dataset that includes clinical, cognitive, personality, demographic, etc. data on users that agree to provide that data, researchers would see that as a huge resource for their research, and they would come running. Tinnitus Talk could then provide access to the dataset for projects they approve of.

* Tinnitus Talk could facilitate recruitment of participants for tinnitus studies, which will and researchers' workload and establish working collaborations. This would be greatly facilitate by the Addie aforementioned data, which could be used to identify individuals who meet criteria for specific studies/trials.

* Tinnitus Talk could become a formal partner on relevant study grants. Many grant opportunities these days require that academic researchers form partnerships with non-academic entities, including not-profit agencies. That is: the project can only be proposed for finding if a partner agency is included on the project. Tinnitus Talk could be that partner agency, which would make it a formal player in the development of the research. Of course, for this Tinnitus Talk would have to actually play a formal role in the project (see above regarding recruitment and dataset construction).

If these suggestions are on the right track, I can likely develop a few more too. But you can see the theme of my thinking: we need to have something that researchers want.

 

[ChrisBoyMonkey]

I'm wondering if we can get a bit more clarification regarding how our priorities may get turned into action items.

@ChrisBoyMonkey's idea seems to suggest that researchers will pitch ideas that we then get to choose between. But wouldn't this require that we have funds to support the project with?

My understanding was that we were to be brainstorming ways to get into the game of steering research priorities, rather than actually selecting them. Is that right?

Assuming the above to be true, some ideas:

* Money talks, sadly: so the best way is definitely to be able to support the research we want to happen.

* Create a dataset that researchers will find valuable: If Tinnitus Talk has possession of a high-quality, comprehensive dataset that includes clinical, cognitive, personality, demographic, etc. data on users that agree to provide that data, researchers would see that as a huge resource for their research, and they would come running. Tinnitus Talk could then provide access to the dataset for projects they approve of.

* Tinnitus Talk could facilitate recruitment of participants for tinnitus studies, which will and researchers' workload and establish working collaborations. This would be greatly facilitate by the Addie aforementioned data, which could be used to identify individuals who meet criteria for specific studies/trials.

* Tinnitus Talk could become a formal partner on relevant study grants. Many grant opportunities these days require that academic researchers form partnerships with non-academic entities, including not-profit agencies. That is: the project can only be proposed for finding if a partner agency is included on the project. Tinnitus Talk could be that partner agency, which would make it a formal player in the development of the research. Of course, for this Tinnitus Talk would have to actually play a formal role in the project (see above regarding recruitment and dataset construction).

If these suggestions are on the right track, I can likely develop a few more too. But you can see the theme of my thinking: we need to have something that researchers want.

My understanding is that this is an optional kind of thing. The recruitment thing of course, we already spread the word whenever that is going on, and there are always some of us willing to try something out.

But money, that I don't think Tinnitus Talk has much of.

 

[Rb86]

In my opinion, the bottom line in all tinnitus research moving forward is this:

If we don't identify the mechanism(s) specific to each causation - (TMJ, stress, hearing loss), then we are simply throwing ideas at a cure with no basis in real science.

Why is it that a stressed out person can work on calming down, and over a period of time tinnitus magically goes away?

Why is it that there are many out there with hearing loss and zero tinnitus?

Everything is speculatory or a band-aid fix until the real mechanism of tinnitus is identified.

The regrowth of lost nerves/hair cells due to acoustic damage seems like an obvious fix to stop tinnitus, but being that someone who is stressed out can stop it, or TMJ mouth guards and/or chiropractors can stop it means to me that there's something deeper going on.

Yes we can all agree there's multiple causes and therefore likely multiple cures, but to me until we can pinpoint the very exact mechanism, there is no point in making therapies based off hypotheses.

Research needs very in depth studies done on stress groups, TMJ groups, and acoustic trauma groups. MRIs, dietary, psych analysis, everything. Identify correlations or differences.

I have yet to hear a therapy being developed because whatever mechanism was identified in stress patients, TMJ, hearing loss across the board. It's generally, we subjected mice or guinea pigs to loud noise, damaged their hearing and now are working on fixing it. Which in itself is great, but it does not identify the tinnitus mechanism.

 

[Hazel]

So many good ideas already, awesome!

@urgentresearch, like your out of the box thinking

@ChrisBoyMonkey, I like the voting idea; there's different ways of implementing this, but I would definitely want to pursue something along those lines. I don't see it as us getting to choose what research gets executed, because as @MattS rightly points out, that would require us being able to fund the studies. But rather, it could be seen as an opportunity for the researchers to get some patient input on their research, some real-life validation that they are on the right track; and I do believe there is appetite for that within the tinnitus research community. Perhaps we could form some kind of patient panel that researchers could consult? But I don't want to get too far ahead of myself and steer the discussion too much in a certain direction at this point - would like to hear more ideas first from the community

@MattS, all excellent suggestions! We do all of those things already to some extent, but I guess the challenge has been upscaling those efforts and finding the time (i.e. volunteer hours) and resources to do it well and consistently. For instance, we have several large datasets that we collected, but we don't have a database that allows us to follow the same respondents over time, and it would be quite a project to build that, though very worthwhile! I also agree we could do a lot more wrt to grant proposals. We have been included in some, but I got the feelings we were more of the "token" patient partner in those cases. I think we have to make a much clearer (business) case to researchers on what we can actually offer them. Again, the idea of a patient expert panel, comprised of patients who are up-to-date on research and can advise researchers on the patient perspective, comes to mind.

@Rb86, thanks for pitching in! I think most of us would agree with you that the research community needs a more clear and consistent direction to lead to a cure. But what we're asking for in this thread is how can we - the patient community - help to make this happen? We're looking for practical ideas that can be (relatively) easily implemented - considering that we have almost no funding and we're all volunteers.

Keep the ideas coming folks!!!

 

[JohnAdams]

Wouldn't the best thing to get all of the drugs being developed for hearing loss and tinnitus tested as quickly as possible to answer a bunch of questions? What else is there really to do? Sit around and draw useless roadmaps?

 

[Hazel]

Wouldn't the best thing to get all of the drugs being developed for hearing loss and tinnitus tested as quickly as possible to answer a bunch of questions? What else is there really to do? Sit around and draw useless roadmaps?

Ok, so trying to paraphrase here, the question would be: What can we - as patient community - do to help the research community get drugs to trial? I think there's a lot of research being done that's promising, but the next step, i.e. how do we translate this into a marketable treatment, is often missing. So how exactly can we help facilitate that?

 

[UKBloke]

@Hazel

If we as tinnitus sufferers are relying on researchers whom themselves are relying on external capital to bring a treatment to market then we really are the bottom of the pile. If we can accept that, then perhaps at this point in time it may be more useful to re-frame the question. Instead of trying to formulate our own strategies maybe we first need to ask the research community: what do you need us, the patient community, to do in order to help you transform your research into a marketable treatment?

 

[JohnAdams]

What can we - as patient community - do to help the research community get drugs to trial?

Lol, uh.................. We could.... uh............. kidnappings?

 

[urgentresearch]

Lol, uh.................. We could.... uh............. kidnappings?

Are you insane???
Kidnapping!?
The correct term is curenapping... and we are but humble curenappers, tending to our scientists.

 

[JohnAdams]

What can we - as patient community - do to help the research community get drugs to trial?

I'm sorry, if I come up with a good plan I will let you know. I am unaware of the answer to this.

 

[ChrisBoyMonkey]

Can we set up a system that researchers can use to contact sufferers based on location if they ever need a patient for research or general questions? An online system that connects us altogether and at arms reach?

I'd like it if when researchers conclude something warrants further research from one of their studies, that they actually follow up with it.

 

[Jurger]

Why reinvent the wheel? Just look at the diseases which have made the most progress the past decades (breast cancer?) and emulate what was done there.

 

[Hazel]

Why reinvent the wheel? Just look at the diseases which have made the most progress the past decades (breast cancer?) and emulate what was done there.

Great idea to take inspiration from other diseases and conditions. Maybe to refine your suggestion a bit further, we could look at which diseases/conditions have made the most progress in research due to direct patient involvement. I've heard for instance that in the UK, the patient organisations for Alzheimer's and Parkinon's disease have been quite succesful in influencing the research agenda. We'd have to confirm that though, and figure out exactly how they did that (volunteers anyone?).

 

[FGG]

Great idea to take inspiration from other diseases and conditions. Maybe to refine your suggestion a bit further, we could look at which diseases/conditions have made the most progress in research due to direct patient involvement. I've heard for instance that in the UK, the patient organisations for Alzheimer's and Parkinon's disease have been quite succesful in influencing the research agenda. We'd have to confirm that though, and figure out exactly how they did that (volunteers anyone?).

I think DMD fits. Patient (well, patient's moms technically) advocacy is directly related to Eteplirsen being approved/released with a small sample size.

 

[gerhei]

Identifying priorities can be best done in open and moderated exchange among patients on the one side and between patients and researchers on the other side.

OT: One top priority should be to first and foremost develop an exact classification of tinnitus types because something like this doesn't exist. As Susan Shore, who works on somatosensory tinnitus, puts it: every researcher is just fishing topics and tries to see what he can find out without doing basic research.

The basic research that is necessary to treat tinnitus is to be able to classify patients according to their type of tinnitus because every type of tinnitus will need another therapy. For example, somatosensory tinnitus needs different treatment than tinnitus that is caused by dead hair cells and problems in the auditory cortex. It is useless to research an all-or-nothing-therapy or to search for one specific cause of tinnitus because there is not a single therapy for all kinds of tinnitus and there are various causes of tinnitus.

 

[Jurger]

Look at this:

https://hearinghealthmatters.org/hearingnewswatch/2019/starkey-expo-2020-las-vegas/

They got Colin Powell, Richard Branson and Matthew McConaughey. Why can't we do something like this for hearing restoration? The future is hearing restoration, not hearing aids with €200 worth of technology selling at €2,000 a pop.

 

[Badger19]

First of all, it saddens me that hyperacusis hasn't been mentioned in this thread. Hyperacusis is much more debilitating than tinnitus yet it is even more underfunded than tinnitus.

That being said, I believe the few funds we have available should be spent on fundamental research. Most current treatments in development are kind of trial and error. Even Frequency Therapeutics kind of hopes that curing hearing loss will also cure tinnitus and hyperacusis (and so do I!). If we actually know what causes tinnitus, curing it will be much easier and much less expensive.

The DannyBoy Fund is an excellent example in my opinion. It is used to learn why some people develop tinnitus when most don't. Financially supporting a PhD student also increases the odds that (s)he will continue working on tinnitus research after finishing their PhD.

Creating a database also seems like an excellent idea to me.

 

[FGG]

I just had a thought. It's not patient groups that typically enact change, it's the lobbists they hire. Hearing loss/tinnitus needs more (are there any at all) and better lobbyists. That's how change in government funding and laws happen.

I wonder if that's where efforts should be concentrated. Being a patient group without lobbyists seems like a good way to be ignored unfortunately.

 

[razo]

If any researchers are reading. Before I got this this debilitation (tinnitus) from a noise trauma I once in a while got that familiar pitched tone (usually in mid range frequency) usually in connection with pressure in the eustachian tubes, that disappears after a few seconds. (My constant tinnitus is the same tone only higher pitched). Post tinnitus I notice that I get these short sounds a lot more often. So this has to do with the same mechanism. It should be easy to try to figure out why eustachian tube unequalized pressure give rise to these tones. Just my 2 cents.

 

[Badger19]

If any researchers are reading. Before I got this this debilitation (tinnitus) from a noise trauma I once in a while got that familiar pitched tone (usually in mid range frequency) usually in connection with pressure in the eustachian tubes, that disappears after a few seconds. (My constant tinnitus is the same tone only higher pitched). Post tinnitus I notice that I get these short sounds a lot more often. So this has to do with the same mechanism. It should be easy to try to figure out why eustachian tube unequalized pressure give rise to these tones. Just my 2 cents.

Not really related to the thread, but I also experience this more often than before getting tinnitus.

 

[TuxedoCat]

Researchers need to unite and make it their mission to find a cure.

What is it they need to know in order to cure tinnitus?

Where are the knowledge gaps?

How can they work to fill them?

I very much like the idea of talking to other patient groups to see how they interact with researchers and how it all started. Then we can regroup and see what is realistic for Tinnitus Hub.

TC

 

[BigNick]

We need to understand via the researchers themselves what the current barriers to progress are and what could be done to facilitate / speed up the process.

We could then work collectively to raise awareness about how devastating tinnitus can be and target everyone / everything in a position of influence to help. Whether that's organisations, politicians, journalists or broadcasters. We could even ask comic relief to help us.

A documentary would be great.

We could write to wealthy individuals with tinnitus, including famous musicians, and ask if they might be willing to help fund research. We know that some of Neuromod's capital came from this.

 

[AquaKane]

Some great ideas in here. Wish I had a new idea to share, since I don't, I will elaborate on what I read. There were some ideas that stood out to me, FGG, gerhei, and MattS. The dataset in my opinion is valuable. I understand you have some data but more in depth data is needed. This is not only beneficial to potential researchers but also the community that are trying all types of self medication to fix their issues.

Having an extensive questionnaire that helps with classification of tinnitus and hyperacusis.

Finding a lobbyist would also be something that can be done. My best friend's brother is a lobbyist who could probably give some direction on this.

@Hazel, is the data you have something that the community can look at or only the moderators?