When Will We Finally Get a Voice in Tinnitus Research?
By Hazel Goedhart, Director of Tinnitus Hub
Imagine being invited to join a group holiday, only to find out you will be travelling to a destination that holds no interest for you. Everything is already decided, and what is worse, it seems that everyone except you was involved in the decision making. Yet, you feel compelled to join because you have no other options.
This is how I often feel when representing tinnitus sufferers in research projects. Over the years, we have built up an extensive network in research. We were invited as ‘partners’ or ‘advisors’ to various projects, but always after the research agenda, budget, and plans had been set in stone. It never felt like an equal partnership.
COVID-19 did not help. With in-person meetings suspended, we had fewer options for engaging with the research community. But that all changed last week when I attended two tinnitus research events in Germany. I packed my suitcase, excited to finally be representing our wonderful community again!
UNITI – will it bring something new?
The first two-day event was all about UNITI, an EU-funded program that stands for “Unification of Treatments and Interventions for Tinnitus Patients”. I am a member of their Advisory Board. The program has been running for over two years now.
An interesting project within UNITI is the identification of genetic markers for tinnitus. We got Antonio Lopez-Escamez on camera to give you the highlights:
At the core of UNITI is a clinical trial that aims to test what combination of treatments works best, and whether success can be predicted based on certain patient characteristics like genetics or audiological profile.
When I was invited to the UNITI Advisory Board, I was somewhat excited about the predictive modeling aspect, but disappointed about the lack of innovation; only existing and well-tested treatments like hearing aids and CBT are included in the trial. Without going into too much detail, attending this meeting did not remove my skepticism; I am doubtful we will see meaningful outcomes that will truly help tinnitus sufferers. That said, I hope I am proven wrong and wish the UNITI researchers all the best in delivering results.
Luckily, I did have a fruitful meeting with the rest of the Advisory Board – who are all ‘outsiders’ from academia and industry. We formulated recommendations, including the advice to include tinnitus sufferers directly in data analysis and interpretation of the data from the trial. Let us hope this will come true, as it could set a new standard for direct patient involvement!
TRI conference – not yet fully grown
In the following two days, the Tinnitus Research Initiative (TRI) conference took place. It was a scaled down version, due to COVID-19, so nothing like the 400 participants in Taipei in 2019 (watch our video series on that event here).
This meant the agenda was also quite limited, and for someone like me – who has been to similar events in the past – there was, to be honest, not that much news to learn.
I did enjoy Pim van Dijk’s presentation about a possible objective measure for tinnitus based on brain imaging. We asked him to explain it to you:
Another interesting presentation included a decision tree for somatic tinnitus, developed by Sarah Michiels, based on survey data that we collected (see this article that we co-authored with her; we will strive to publish the decision tree itself here soon).
There was one session that baffled me, and I am still not quite sure how to feel about it, so I would love to hear your opinion. It was all about this article – basically an appeal from over 50 tinnitus researchers to coin the term “tinnitus disorder”, meaning tinnitus plus associated suffering. Personally, I do not understand how this terminology is helpful, either in a clinical setting (it seems almost stigmatizing), or in research (does it get us closer to a cure?). Perhaps I am missing something; I would love to continue the debate.
Hazel’s message on behalf of the tinnitus community
Yours truly also got her 15 minutes of fame. It was a small slot in one of the ‘break out’ sessions, so attendance was low, but it was still nice to be on the official program. Markku and I worked hard to develop this video – which includes members of the tinnitus community expressing their hopes and expectations from research:
After showing the video, I added some practical thoughts on how researchers should involve us in their research plans and execution. I was a bit nervous, as you can maybe tell:
All in all, I am glad I went. In-person networking holds added value beyond anything you learn from the formal programme. New connections were made and ideas for new research projects were born, which you will hopefully hear more about soon.
Greater ambitions for TRI 2023
I look forward to the TRI conference in June 2023 in Dublin. The organisers told me it will be much bigger than this year. And I was encouraged to read the objective of the conference, which to me seems much more ambitious and patient centered than ever before:
“While tinnitus is a common symptom, there are only a few treatment options available to mainly reduce the impact rather than specifically address the tinnitus percept. Although market research demonstrated a strong commercial opportunity for an effective treatment for tinnitus, the amount of tinnitus research and financial investment is small compared to other chronic health conditions. This in contrast to the financial burden tinnitus has on healthcare systems and the even greater economic impact on society. The global community of tinnitus sufferers demand urgent action and cures, which can be developed by building a solid foundation of knowledge. TRI 2023 aims to bring together world-class scientists and clinicians within the field of tinnitus and welcome industry and policy makers to address these impending issues. TRI 2023 aims to bridge the gap between academia, industry & society. We will invite people from other scientific fields that can give us insights about how they made the successful translations from bench to bedside, as well as emerging scientific fields such as big data science, personalized medicine, neuroinflammation, and genetics. It is TRI 2023’s intention to open new avenues of research, clinical practices, and patient engagement strategies in tinnitus, setting us on a path of disruptive innovation.”
Finally, I am delighted to announce that I have been asked to join the Scientific Committee for TRI 2023! This means that I (and therefore you) get to co-develop the agenda. Also, the conference will be opened up to tinnitus patients directly, for the first time ever, which means I will no longer be the only one representing the tinnitus community. Now that’s what I call patient involvement.