People whose lives have been touched by hearing loss are being offered the opportunity to take part in a national survey that could help to shape the future of research into the condition.
The survey into the prevention, diagnosis and management (treatment) of mild to moderate hearing loss is being coordinated by the National Institute for Health Research (NIHR) Nottingham Hearing Biomedical Research Unit (BRU) and has been developed by the James Lind Alliance Priority Setting Partnership with funding from the Nottingham Hospitals Charity.
The two organisations are keen to hear the views not only of patients affected by hearing loss, but also their friends and family members, as well as professionals working in this area.
Helen Henshaw, Senior Research Fellow and Priority Setting Partnership coordinator at the NIHR Nottingham Hearing BRU, said: “Hearing loss research topics have typically been decided upon by researchers in universities.
“This Priority Setting Partnership is important in redressing the balance of power and enabling those who really understand the issues surrounding mild-moderate hearing loss to have their say. The NIHR Nottingham Hearing BRU will ensure that the outputs of this process are brought to the attention of research funders, research commissioners and policy makers, to enable future research to answer the priority questions for mild to moderate hearing loss that are aligned to patient need.”
Hearing loss affects 10 million people in the UK — one in six of the population. It is a long-term condition that hinders communication. This can lead to social isolation, depression and poor quality of life. There is also an association between hearing loss and an increased risk of having dementia. As such, it is important that those affected receive the best care.
Research funders and researchers themselves have typically guided the direction of study into the prevention, diagnosis and management of hearing loss. However, people affected by hearing loss, and their friends, family and clinicians, can offer valuable insights into which are the most important unanswered questions for research.
The James Lind Alliance Priority Setting Partnership brings together Hearing Link, Action on Hearing Loss, the British Society of Audiology, the British Academy of Audiology, the British Society of Hearing Aid Audiologists, the UK Cochrane Centre, and is coordinated by the NIHR Nottingham Hearing BRU.
David Crowe, James Lind Alliance Advisor and chair for the Partnership Steering Group said: “What I find so powerful about the mild-moderate hearing loss project is the ongoing commitment of the partners representing patients, carers, hospitals, universities, charities and others to cooperate on research priorities for the future.
“We have made a good start in creating a well-balanced steering group, and want to spread the survey out as far and wide as possible and involve a large constituency of people in the priority setting.”
Hearing Link are the UK organisation for people with hearing loss and their families – and the user organisation for this Partnership. Linda Sharkey, UK director, said: “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 of hearing loss. We want people who experience hearing loss, patients, family members and clinicians to be part of this process, because they hold a level of insight into this issue that is much sought-after and needed.”
The online survey, which is open until the end of December, can be completed at www.hearinglink.org/james-lind-alliance-priority-setting-partnership
The Partnership can also be contacted by email at JLAhearing@nottingham.ac.uk and followed on Twitter at @JLAhearing
The National Institute for Health Research (NIHR) Nottingham Hearing Biomedical Research Unit is a partnership between The University of Nottingham, Nottingham University Hospitals Trust and Medical Research Council Institute of Hearing Research
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