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How would you describe public and patient involvement in research?

Patient involvement is not just about testing people in a research study, it’s about valuing their active contribution as part of the research team. People like me who live with tinnitus every day have unique experiences that can add an important personal perspective to research. As somebody suffering with tinnitus, I can bring a bit more of an insight of what it’s like living with a whistling kettle in my head 24 hours a day, 7 days a week, 365 days a year. This can make tinnitus seem more like a real problem to researchers, making sure the right question is asked and working out what the solutions are that might really make a difference to people.

Tell me a little bit about how you got involved in public and patient involvement?


After I visited the NHS audiology department for my clinical appointment, I received an invitation from Sandra at the Nottingham Biomedical Research Centre to receive the quarterly newsletter from the hearing sciences team. An article in the newsletter asked if people would care to be involved, so I emailed back and said “Yes, if I can be of any use”. So now when somebody’s doing a project, Sandra sends me an email describing what it is that a research team is looking for, and if you fit this bill then you can send your application to whoever is doing the research. That’s how I got involved.

Anything that can help the clinicians find out what’s going on inside a person’s head and find a possible cure is worth investing in, because tinnitus is not much fun to live with. I put up mental blinkers to try and block it out most of the time, but I can’t do that all day and at times it does not so much get me down, but gets on my nerves. So anything that will help find out the causes of tinnitus and if there is any chance of a cure is worth giving my time for.

One of the studies that you’ve been part of the team is the COMiT’D study. This was an international collaboration whose aim was to create standards for what to measure in clinical trials that test out tinnitus treatments. What did you contribute?


At the beginning it was myself and Veronica (who also has tinnitus). We had a lot of keywords to look at and we whittled them down so that they could be put into an online survey. We also helped the research team to give a plain English description for each of those keywords, rather than technical clinical terms. These descriptions were really important to make sure that all of the participants clearly understood the long list of keywords they had to look at, and it was quite important to get them right. If the study was all clinicians talking between themselves, they would understand exactly what those terms mean. But when you’re trying to ask a member of the public, you need to put it in their language or understand what their language means. It also got all of the clinicians who were questioning patients asking the same questions so that the research can mean something.
This list of words and descriptions were taken to public involvement to sort out what people thought would be the most important, and we had to prioritise what we thought were the most important things to measure. Then everybody’s answers were shuffled together and the study came out with the five most important ones.

What personal strengths do you feel you brought to the COMiT’D study?


I think one of my personal strengths was the fact that I understood a fair bit of these keywords. Having worked in the hearing research industry for 12½ years, I understand how researchers go about things. So it wasn’t such a hard slog for me to interpret the terminology of the descriptions into plain English.

How do you hope the project might make a difference to people with tinnitus over the longer term?


I hope that it will concentrate clinical trials into more standardised research practices instead of everyone going off on their own a little bit all over the world. It will be a focus for clinical trials and possibly get to an answer more quickly. If everybody around the world is singing off the same hymn sheet, then the answers mean more than if people are all asking different questions. I hope that it will concentrate people’s efforts to target similar questions and therefore make progress more quickly.


What sort of breakthrough do you anticipate seeing in the next 10- 15 years?


Hopefully we might get to understand tinnitus a little more; why it happens and maybe a cure for it (if it is curable). Cochlear implants give non-hearing people at least some form of hearing ability. It may not be perfect but at least it’s started, and it might help reduce their tinnitus. They do have some benefit already using cochlear implants, but we could do better.

Do you have any message for anybody who’s reading this article and who might be spurred on to get involved in tinnitus research?


I would ask people to get involved in tinnitus research purely because (from a personal point of view) I’ve lived with it for about 25 years now. In that time, there’s still very little understanding about it and treatment for it and a lot of people around the world suffer from it in differing degrees. If more people got involved, I think it would advance the speed of progress compared to the progress that’s been made over the last two decades. The more people you put on a job, the quicker it gets done. So you’ve got to have focused research which is what the COMiT’ID study outcomes were all about. So its worthwhile to get involved.

Do you feel any personal benefits from being involved in the research team?


Yes, its broadened my horizons on how you go about these things. I never realised how long it took to do good research and how many hoops you have to jump through to get a study in place. It’s not a simple case of going to work one morning and saying “I think we’ll study this tomorrow”. To do it properly, it takes a lot of work. The COMiT’ID study team have done the vast majority of thinking about how to go about good research. Getting the public involved and then coming up with an end result which you can then put to the governing bodies is a great result.

It’s been an inspiring conversation. Thank you Brian.

About Brian

Brian Thacker is now retired after many years working in the electronics workshop at the Medical Research Council Institute of Hearing Research in Nottingham designing and building innovative equipment for hearing research. He now enjoys an active and busy retirement which includes contributing to research through the National Institute for Health Research (NIHR) public involvement programme. Brian has hearing difficulties and tinnitus, and he has been prescribed bilateral hearing aids provided by the National Health Service.