Equity of Access in R65 Testing

Introduction to project

Assessing the equity of access within our region is an important project for the Central and South Genomic Medicine Service Alliance.

Working with teams in our partner Trusts and Laboratories we have been looking to assess how our services are accessed across the region as part of a wider piece of work to have positive engagement with all areas and raise awareness of services available. R65 testing is the current focus for this work, looking specifically at: how patients are referred for the testing, why they are referred and where they are referred from, to map out where we have differences in patient numbers accessing services.

As a result, we hope to be able to make access to our services as equitable as we can, with clinicians aware of the service on offer and how to access it for their patients.

What is the condition?  

R65 testing is used when aminoglycoside exposure poses a risk to hearing.

Aminoglycosides are types of antibiotics used for treating suspected or confirmed acute serious infections, and the long-term management of recurrent respiratory infections in cystic fibrosis and multidrug-resistant tuberculosis.

They can however, cause a debilitating side effect known as ototoxicity – the permanent loss of hearing or balance.

Estimates of the incidence of hearing loss after aminoglycoside treatment vary widely, due to differing dosing regimens and sensitivities of audiological tests.

What are we doing? 

This project has focused on scoping the various approaches to this work undertaken in our partner GMSAs and other public organisations, to find the best approach for our region.

R65 testing has the potential to be available to greatly increasing numbers of patients in the coming years We believe that this testing is, at this stage, the perfect platform for us to assess how our testing is being used, so that we can address and further engage with areas where we are seeing less patients, whether this be a geographical area or specific condition/patient pathway.

We hope to be able to map our region according to current referrals in order to investigate further and support the increasing numbers of referrals we see by engaging with clinicians who could begin referring patients to us.

Where can I find out more?

UK Government Drug Safety update: 

https://www.gov.uk/drug-safety-update/aminoglycosides-gentamicin-amikacin-tobramycin-and-neomycin-increased-risk-of-deafness-in-patients-with-mitochondrial-mutations

Who can I contact?

GMSAAdmin@uhb.nhs.uk