Hyperacusis Priority Setting Partnership (PSP)

Hyperacusis study logo

We want to find the Top 10 research priorities about Hyperacusis. The best way to do so is to work together with people who have lived experiences of hyperacusis, such as adults and childre experiencing hyperacusis and parents, carers, teachers, health professionals and members of the public who work with and support those who experience hyperacusis. By taking a collaborative approach and giving equal attention to every voice we will find out what really matters most to people who have lived experiences and knowledge of hyperacusis. Turning what matters most into priority questions that will have a real and lasting impact on future research.

At the NIHR Nottingham Biomedical Research Centre we recently expanded one of our research programmes to have a dedicated strand of work on hyperacusis.  To help prioritise the work that we and others conduct, we decided to take the opportunity to work with the James Lind Alliance (JLA) in a Priority Setting Partnership (PSP) around Hyperacusis.

Watch this video to find out more about this project (it can be muted and subtitles are available by clicking on the buttons in the menu bar at the bottom of the video):

What is hyperacusis?

Hyperacusis is a hearing disorder involving an increased sensitivity or decreased tolerance to sound at levels that would not trouble most individuals. For the person experiencing hyperacusis everyday sounds can be unpleasant, intense, frightening, painful and overwhelming, and can cause anxiety and distress. This can have a significant effect on life. For example, it can interfere with education, the ability to work and/or participate in social and family life.

What is the project?

The project involves a short survey that you can complete online or by post. We want to know the ideas, questions and experiences that you have about hyperacusis. Your responses to the survey will help us to list questions about hyperacusis that you would like answered through research.

The survey will be open for two months and can be completed by anyone www.surveymonkey.co.uk/r/hyperacusis. For the project to work, we need to get as many responses as possible from people who have lived experience of hyperacusis. This includes adults and children experiencing hyperacusis, carers, parents, family, teachers, members of the public and health professionals who work with and support those who experience hyperacusis. PLEASE NOTE, survey is now CLOSED, but a follow-on survey will be opening soon.

With the information we collect, we will work together with people who have lived experience to form a set of research priorities to make sure that the questions that are important to you attract funding and get answered. Who we are.

The survey should take 5 - 20 minutes to complete depending on how much you have to say. You can answer as many questions as you would like to in the survey. It is not necessary to answer every question, as long as you tell us what is really important to you.  For each question please write as much or as little as you like. Participate now. PLEASE NOTE, survey is now CLOSED, but a follow-on survey will be opening soon.

In partnership with:

James Lind Alliance logo

Twitter logo @hyperacusisJLA Twitter handle