A James Lind Alliance Priority Setting Partnership for Mild-Moderate Hearing Loss
We are co-ordinating an initiative to identify and prioritise research into mild and moderate hearing loss. Hearing loss is defined by categories depending on the level of the thresholds (mild, moderate, severe or profound).
Mild and moderate hearing loss can affect many aspects of an individual’s life, including:
- Understanding voices
- Listening in a group conversation or in background noise
- Hearing on the phone
- Tolerating loud sounds
Not all listeners will experience these difficulties to the same extent. Two listeners with the same or similar hearing thresholds may face entirely different challenges in their everyday life.
Sometimes, hearing loss can develop at a very gradual rate with age, so it is not uncommon for individuals to have hearing loss for many years before noticing there is a problem and seeking help. Family and friends may even notice the hearing loss before the individual experiencing it. Often, hearing difficulties affect not only the individual with hearing loss, but also those with whom they communicate.
Why do we need your help?
Until recently, most of the questions about hearing loss have been decided upon and answered by researchers in universities. The degree of involvement of people with hearing loss, their friends, family members and clinicians is uncertain. To ensure future research answers questions that are relevant to people with mild-moderate hearing loss we are asking everyone affected to define the most important questions they would like to be answered and prioritise them for research.
What are we asking you to do?
A Priority Setting Partnership has been set up to identify unanswered questions for mild-moderate hearing loss; its causes, diagnosis, management and self-management. We would like you to think about your own experiences of hearing loss. What do you want to know more about? What questions have you been unable to find an answer to? What questions do you think researchers should be working on?
What will we do with your questions?
The questions we receive will be gathered, grouped by topic and checked against published research to see if they have already been answered. If we find answers to any of the questions we will use this website to publicise them.
All unanswered questions will then be ranked by those directly affected by mild-moderate hearing loss, their friends and family, and healthcare and social care professionals at a workshop to find out which are the most important questions.
This process generates a 'top 10' list of research questions which will be published and made widely available to the public on this website. Finally, we will ensure that the ‘top 10’ list of research questions is brought to the attention of researchers, research funders, key stakeholders and commissioners so that they may be answered by research.
The James Lind Alliance will facilitate this process and ensure transparency, accountability and fairness throughout.
How do I complete the survey?
The survey can be completed online or downloaded, printed and completed by hand. Go to the following link for further details: http://www.hearinglink.org/jla-psp/survey. The survey will be open until 31 January 2015 and takes 5-10 minutes to complete.
Who is involved in the Partnership?
The Partnership has been set up with the James Lind Alliance. The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important.
Partner organisations in this initiative are listed below:
Hearing Link (user organisation)
NIHR Nottingham Hearing Biomedical Research Unit
Action on Hearing Loss
The British Society of Audiology
The British Academy of Audiology
The British Society for Hearing Aid Audiologists
UK Cochrane Centre
The Partnership has been kindly funded by Nottingham Hospitals Charity.
I think that this Priority Setting Partnership on mild to moderate hearing loss is really important, because there is probably still much to learn about the effects, impact of and treatments for this range hearing loss. We want people as patients/clients and family members to be part of this process, because they hold a level of insight into this issue that is much sought-after and needed.Linda Sharkey UK Director of Hearing Link
If the funding of research into hearing loss is to be targeted effectively, I believe it’s essential to seek the ideas and views of as many people with a hearing loss as possible about what aspects of deafness merit research. I’m delighted to be involved in this project and I look forward to helping to build a list of questions about mild to moderate hearing loss which will hopefully one day result in solutions to some of the challenges that people with hearing loss have to face.Robin Wickes Hearing aid user and member of the Partnership steering group
Considering the prevalence and highly variable consequences of mild and moderate hearing loss in the adult population, there has been surprisingly little research into all the many aspects of the management of this type and degree of sensory impairment. BSHAA offers its strong support for this [Partnership] in the hope that resultant research will inform and influence both professional practice and public attitudes to a hugely underestimated range of conditionsBarry Downes President of the British Society for Hearing Aid Audiologists (BSHAA)
With the numbers of people with hearing loss set to rise from 10 million to 14.5 million by 2031 and considering the implications hearing loss can have on reducing quality of life, it’s critical that the opinions of those who are affected by hearing loss and clinicians drive future research priorities.Gemma Twitchen Senior Audiologist for Action on Hearing Loss (formerly RNID)