Robin Wickes: Help me target research into mild and moderate deafness

Posted on December 3, 2014 by



Here’s an opportunity to influence the targeting of research into mild and moderate deafness.

Relatively little money is spent on research into deafness, actually less than half the amount spent on research into visual impairment based on disability-life-years.

Therefore it’s absolutely essential that the funding available is targeted effectively. The best way to achieve this is to make sure people with experience of deafness are consulted about what’s genuinely important to them rather than leaving it to academics to decide what research to conduct.

A project called a Priority Setting Partnership, or “PSP”, has recently been set up by the National Institute for Health Research, working closely with the charity Hearing Link.

It’s a partnership consisting of folk who have experience of deafness – not only deaf people themselves but also carers, audiologists and other clinicians. As a moderately deaf volunteer for Hearing Link I’ve been invited to sit on the PSP’s steering group.

We’ve designed and launched an online survey which we’re inviting people with experience of mild or moderate deafness to take part in. The survey sets out to identify “unanswered questions” about mild and moderate deafness. It invites you to think about your own experience of hearing loss. What do you want to know more about? What questions have you been unable to find the answer to? What questions should researchers be working on? These can be questions about the causes, diagnosis or treatment and management of hearing loss.

All the responses will be analysed and sorted by our project team with the objective of building a top-10 list of questions and issues which we will then use to influence research into deafness.

By asking people with actual experience of hearing loss to do the survey, we’ll be able to ensure that the list reflects the issues that are genuinely of concern to deaf people. And of course, if research is funded into these genuine issues, it will be money well spent.

Here’s a link to the survey.

http://hearinglink.org/james-lind-alliance-priority-setting-partnership

As you’ll see, the link is to Hearing Link’s website, where there’s much more information available about the survey and the project.

Please do the survey if you have experience of mild or moderate deafness, in other words if you are mildly or moderately deaf at the moment or if you have been mildly or moderately deaf in the past, or if you have indirect experience as a family member, friend, carer or clinician.

The more responses we get, the better our results will be in terms of identifying the priority issues. So please let others know about the survey too.

A few years ago Robin took early retirement because of his moderate deafness, the main cause of which was probably his Stratocaster (or cheap Japanese copy thereof). His ambition now is to start a band called the Presbycusians. In the meantime he’s mostly managing to keep out of trouble by volunteering for various deaf agencies like Hearing Link and Action on Hearing Loss for whom he’s a keen public speaker and campaigner for better deaf awareness.      

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