Can Patient Data Be the Best Tool for Tinnitus Researchers?

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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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.

 

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!