Robin Wickes: Have your say…. and influence research into deafness

Posted on July 16, 2015

Some months ago I posted an article asking people to do an online survey which invited them to ask any questions about mild and moderate deafness to which they’d like to know the answers.

A follow-on survey has now been launched which aims to rank these questions by importance. The surveys are part of a project being run by the National Institute for Health Research in collaboration with the charity Hearing Link (for whom I’m a moderately deaf volunteer) with the objective of improving the targeting of research into deafness.

Right now it tends to be largely scientists and academics who decide what research to undertake. We’d prefer the decision to be based more closely on what’s important to people with actual experience of the challenges faced by deaf people.

We were delighted when more than 1200 questions about deafness were submitted in response to the first survey. Many thanks to all visitors from The Limping Chicken who took part.

We’ve now consolidated these 1200 questions down to about 90 “indicative” questions and launched our second survey which asks respondents to rate each of these 90 indicative questions in terms of importance – from “Not a priority” to “Very high priority”. The project team will analyse the responses and develop a Top-ten list of the most important issues which we’ll then present to the research organisations as the issues perceived to be most worthy of research.

Anyone with experience of mild or moderate deafness is encouraged to do this new survey, regardless of whether or not they did the previous one.

This includes not only people who are mildly or moderately deaf just now but also those who have been mildly or moderately deaf in the past and whose deafness has since become worse (or better).

Also included are relatives, friends, carers and colleagues of mildly or moderately deaf folk. In other words, anyone with direct or indirect experience of mild or moderate deafness is invited to participate.

Here’s a link to the survey. It’s on Hearing Link’s website. And it’s anonymous:

As you’ll see, the survey involves reading and rating 90 questions in turn about a very wide

range of aspects of deafness. It therefore takes about half an hour to do – time well-spent if it

results in more effective research into deafness.

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