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Tinnitus Tinnitus Care 2.0. Hazel Goedhart and Markku Vesala
tinnitus hearing health foundation Tinnitus Care 2.0 Tinnitus patients find support online while providing valuable data for future research.
By Hazel Goedhart and Markku Vesala
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“Don’t look online.”
This is often a warning from healthcare professionals. The premise is that the internet is a dangerous place full of doom and misinformation, potentially making you feel more worried and alarmed. Still, people often seek help online because they may have nowhere else to turn. They may lack a community that understands their problem.
This is particularly true for people struggling with tinnitus, or the experience of hearing ringing or buzzing without an external sound source. There is no cure for tinnitus, and current treatment options offer, at best, management of the condition.
At Tinnitus Hub, a U.K.-based nonprofit with a global reach that is led by volunteers who all have tinnitus, we believe in the power of online communities to connect with others and provide support. More than that, we believe that online communities can be influential players with the power to change the future of tinnitus research and care.
The Struggle to Cope
If you visit your general practitioner, audiologist, or ENT (ear, nose, and throat specialist) for help with your tinnitus, they are likely to utter some variation of “you’ll need to learn to live with it.” That is easier for some than for others. In a 2020 online survey we conducted, we found that 30 percent of people seeking help on the internet for their tinnitus have had tinnitus-related suicidal thoughts. This is a scary statistic, telling us that “learning to live with it” can mean a few months until habituation for some—yet seem like a near-impossible task for others.
Those who are struggling with their tinnitus deserve more effective treatments than currently available. In the absence of that, counseling can help to cope, but inevitably many will seek solace online, where they may encounter shady scams, unstructured social media groups, and overpriced “cures.” Recognized tinnitus associations can offer resources, but may not have a community aspect.
This is where Tinnitus Talk comes in, the community arm of Tinnitus Hub. Tinnitus Talk is the largest online tinnitus support forum, with over 32,000 registered members around the world and millions of annual unique visitors. Having managed the forum since 2011, we truly believe it fulfills a key role by offering peer-to-peer support for tinnitus sufferers.
After a sophisticated language analysis of a random sample of nearly 3,000 posts in the Tinnitus Talk Support Forum over four months (late 2019 to early 2020), a computer science graduate student found that the vast majority of discussions have a neutral or positive sentiment. People may vent their frustrations, but they also lift one another up.
Tinnitus research is a small field. According to a 2019 analysis, other neurological conditions such as depression and anxiety receive more funding and attention.
We always encourage Tinnitus Talk forum users to filter advice and information from other users wisely, and we are working with researchers and clinicians to provide objective, evidence-based information to balance out the multitude of voices and opinions on the forum.
For instance, in our 2018 survey 58 percent of respondents found advice from other users helpful, but 29 percent found the advice can be conflicting. While we always encourage users to filter advice and information from other users wisely, we are working with researchers and clinicians to provide objective, evidence-based information to balance out the multitude of voices and opinions on the forum.
Boosting Data Collection
We realized some years ago that online communities can do more than just provide peer-to-peer support. In fact, they contain a wealth of potential data for research. Hence, we started collaborating with qualified researchers wanting to mine Tinnitus Talk for data or recruit study participants.
We also began to collect our own datasets, focusing on topics that are important to those who have tinnitus. Using our online surveys, we have been aiming to achieve the highest response rates ever in tinnitus research. Since 2016 we have conducted five surveys, about once a year, with responses ranging from 1,800 to 8,000-plus.
We have shared our data with interested academics, co-authored on multiple academic papers, and also provided articles like this one to interested patients and professionals. We are now looking at how to take our data gathering to the next level by building a database to collect longitudinal data, following a group of people over a longer period of time. This could enhance insights into how tinnitus changes over time and which factors affect any changes.
Steering Research
Tinnitus research is a small field. According to a 2019 analysis in Frontiers in Neuroscience, other neurological conditions such as depression and anxiety receive more funding and attention.
We want to make sure that the limited resources available for tinnitus research are spent wisely and meet the needs of those who suffer from tinnitus. To this end, we have taken up the concept of Citizen Science, involving ordinary people in science, not just as research subjects but as active participants or even co-creators.
Our surveys indicate the type of academic research we want to stimulate with our data collection—that is, cure-focused research, mainly studies that uncover the underlying mechanisms of tinnitus and/or identify effective treatments.
In addition, results from a Tinnitus Talk poll demonstrated a desire for more involvement in the earliest stages of research, determining the priorities of new research projects. We formed our own Patient Expert Panel to collaborate directly with researchers. The panel has worked with, among others, Will Sedley, M.D., Ph.D., of Newcastle University in the U.K., advising him on a new research project related to predictive brain processing and tinnitus.
We also asked Tinnitus Talk users to vote on newly published tinnitus research papers to help indicate which area they find most meaningful to their own experience. We have so far conducted two pilot votes of papers on a wide range of topics (e.g., causes, related conditions, treatments), and will be communicating our results to the research community. The hope is that this will make tinnitus research even more driven by the needs of those afflicted.
Thanks to technology and greater connectivity, online communities will only grow in number and force, and we hope to continue harnessing these forces to the benefit of people with tinnitus.
Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala. For more, see tinnitushub.com and tinnitustalk.com. For references, see hhf.org/winter2021-references.
Share your story: Tell us your tinnitus journey at editor@hhf.org.
