Can Patient Data Be the Best Tool for Tinnitus Researchers?

[Tinnitus Talk]

Munich sunset, the evening before the first day of the meeting

It's been a pretty cool week. I don't sleep well when I travel so the tinnitus has been loud, added to sitting up and paying attention all day, which gives me a stiff neck and makes it even louder. It's mostly been pushed from the front of my thoughts however.

Following on from what was a really interesting week at TRI 16 in Nottingham, we were invited to a 2-day Think Tank in Munich, organised by the Tinnitus Research Initiative. The purpose was to discuss an app to help gather patient data and inform research – or to quote the theme – Ecological Momentary Assessment.

I should first give out a...

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[glynis]

Glad it went well and you had a nice time and enjoyed the beer....lots of love glynis

 

[Steve]

Glad it went well and you had a nice time and enjoyed the beer....lots of love glynis

Thanks Glynis.

It's pretty amazing to be involved in something like this, to represent patients and play our part in research.

 

[Starthrower]

I have been going through your site here and somehow didn't see this or know comments could be posted!

I read your blog about your experience and found it so outstanding in a few ways. First, you did this on your own time for your organization. Not many understand how much effort something like this takes. And most people who do this work do not let others know how much time and effort and personal finances to represent the Tinnitus Hub/Talk and the great survey that made a huge impact!!

Thank you Steve. I do believe your presentations made a lasting impression.

To the topic question: It has always been my feeling that all tinnitus research funding needed to have a connection with the actual tinnitus patient who is suffering terribly. People may find donating for this research a worthy cause when the stories are told of those who could not cope and are no longer with us. the ones who continue on in pain and those who found some way to ease the noise in the brain and move forward with life.

So I do think patient data is an important implement for tinnitus researchers.
And I do not think such information by the patient needs to be some triple blind study. Life stories and experiences really cannot be measured. Until it happens to someone they love.

Thanks and glad you enjoyed the trip even though traveling will up the tinnitus.

 

[Steve]

@Starthrower
Thank you very much, that's very kind of you to say.

If we can make a difference then I'm pleased and the time and money spent is well worth it. It's not easy but if those of us with tinnitus don't stand up and do something then who's going to do it for us? I've never been the type to sit back and let others do the work.

It has always been my feeling that all tinnitus research funding needed to have a connection with the actual tinnitus patient who is suffering terribly. People may find donating for this research a worthy cause when the stories are told of those who could not cope and are no longer with us. the ones who continue on in pain and those who found some way to ease the noise in the brain and move forward with life.

Absolutely. It feels disconnected in so many ways, perhaps because there is always money at play and corporates want to protect their investment. There's not enough joined up thinking and little involvement with the patient. I would like to think that we can be a part in changing that.

At the moment I really couldn't think of research that I would personally donate towards. There is some really interesting work going on that I find fascinating; I'm happy to give my time where I can but I don't feel enough of a connect to put my hand in my pocket.

So I do think patient data is an important implement for tinnitus researchers.
And I do not think such information by the patient needs to be some triple blind study. Life stories and experiences really cannot be measured. Until it happens to someone they love.

Yes, that's where an online community can be very strong too. We will be moving on with surveys and collecting information and bit by bit looking for patterns and interacting with the research community.

I have recently been thinking of an idea that I'm going to float on TT. There is a reasonable amount of research out there but how often do people put the pieces together? I think that the sheer amount of research that we all do when we get tinnitus can help to join the dots between ideas across disciplines, if we can somehow coordinate that then maybe we can come up with some insights.

 

[suze]

Nice post. Path Finder posted an article questioning the direction of present research. The term it used was barking up the wrong tree. I agree. If something worked, it would be working for us. Joining the dots is a wonderful idea. Maybe it will lead us to the right tree. LOL Reminds me of Dr. Seuss. Go Dog Go!

 

[Contrast]

yes. Researchers should ask patients questions and look for similarities and common themes as well as uncommon reasons why people have tinnitus.

 

[Greg Sacramento]

Researchers should ask patients questions and look for similarities and common themes as well as uncommon reasons why people have tinnitus.

This is weird because I was going to ask you a few hours ago to help me with a study on common reasons why people have tinnitus beyond a year.

We know about hearing loss and hair cells with T. Keeping that in mind, what about also having physical connections! Joints don't heal without treatment. Muscle can with or without treatment. Certain nerves among hundreds may heal on their own and others won't. Sometimes infection is treated and sometimes not. Whenever someone with physical T has a temporary deduction there's a reason. Most reasons are known for T increasing. I would like to see a study done for those that can get a temporary deduction and study their physical problems to determine why.