If you have lived experience of a condition, your opinion and advice is going to be crucial to researchers, say two patients involved in new hearing loss studies.
The National Institute for Health Research (NIHR) Biomedical Research Centres (BRCs) at University College London Hospitals, Manchester, and the University of Nottingham conduct cutting edge research in to hearing loss and tinnitus. They collaborate with people with lived experience of hearing loss and tinnitus to coproduce their research.
Jean Straus lost her hearing without warning- known as idiopathic sudden sensorineural hearing loss. “There’s a temptation to withdraw from life,” she admits. “But I try not to give in to it.”
Unfortunately, things have been made worse by COVID-19. “When I talk to someone who’s wearing a mask, I can’t see their lips moving,” says Jean. “I turn from an articulate woman into a person who is dependent on their willingness to adapt how they communicate with me.”
However, Jean has found a new sense of empowerment by taking part in hearing loss studies. “When you lose your hearing, you feel helpless,” she says. “But collaborating with the BRCs to co-produce research has helped me feel more in control. It’s mentally stimulating, wonderful to be at the cutting-edge of hearing loss developments and to have your voice heard by researchers whom I respect.”
Michael Prior agrees. He has suffered from late-effect hearing loss and tinnitus as a result of the cancer treatment he had in the early 1980s. Michael now works closely with the NIHR BRCs, including research into the late-effects of platinum-based chemotherapy.
“People such as Jean and I have lived experience of this condition,” he says. “That’s why our opinion is so valuable. I became interested in helping researchers because I have hearing loss and tinnitus, but also because I wanted to put something back into healthcare. I’ve gained a lot and would recommend it to anyone.”
There’s a temptation to withdraw from life. But I try not to give in to it.
A variety of ways to be involved
Dr Padraig Kitterick, hearing theme lead at the NIHR Nottingham BRC, says “It is vitally important that we work closely with people who have lived experience of hearing loss and related conditions like tinnitus and hyperacusis, at all stages of the research process…getting involved can also mean helping to decide what research questions we should be asking and being a key part of the team that designs and carries out the research.”
Using data to improve treatments and develop new solutions
Both Jean and Michael insist that using routinely collected health data for research is crucial to improve treatments for those with hearing issues. “Data is a rich resource,” says Michael. “In my view, it’s important that the medical establishment gets buy-in from the patient community to use their health data in order to advance research and make breakthroughs.”
Mr Nish Mehta, consultant ENT surgeon who leads hearing health data research at the NIHR UCLH BRC, says “by anonymising and combining the information across hearing health providers we plan to develop a better understanding of how hearing loss, and its current treatments, affect our population. We hope to develop new methods of identifying underlying causes of hearing loss, giving us the ability to offer targeted trial participation for the most appropriate patients.”
Working together for patient benefit
The three BRCs regularly join forces to maximise the ability of their research to help patients with hearing loss and tinnitus – recently securing NIHR funding for the FAMOUS trial looking at hearing aid use. Professor Kevin Munro, NIHR Manchester BRC Hearing Health Lead says: “The scale and scope of FAMOUS is unparalleled in UK audiology and would probably not have been possible without the collaboration of all the leading hearing research groups.”