How tech can help people with motor neurone disease get their voice back

30 May 2022

Marino Software CEO Keith Davey and principal investigator at the Maynooth University Innovation Lab Trevor Vaugh at Future Human 2022. Image: Conor McCabe Photography

At Future Human, Marino Software CEO Keith Davey and Maynooth University’s Trevor Vaugh spoke about how voice-banking tech can change the lives of people who have motor neurone disease.

“There’s 400,000 people at any one time suffering from motor neurone disease, but that’s a tiny fraction of the actual potential application of this.”

That’s what Keith Davey, CEO of Irish software consultancy Marino Software, explained when talking about voice-banking technology at Future Human 2022.

Speaking with editor Elaine Burke, Davey and Trevor Vaugh were discussing the software they have worked on to help give those with motor neurone disease their voice back.

Vaugh is the principal investigator at the Maynooth University Innovation Lab and is known for his work on RTÉ’s the Big Life Fix – the show that develops innovations to help people who have various medical conditions.

Working together on the programme, Vaugh and Davey were able to help Róisín Foley to continue communicating with her family. Foley was diagnosed with motor neurone disease in 2017, which will eventually render her unable to speak with her family.

Vaugh said they gave Foley a microphone for a week to get recordings of her natural voice. Using a combination of recordings and AI-generated sentences, the goal was to create a digital voice that was as natural to her own as possible.

“Only about 20pc of people diagnosed with motor neurone disease actually bank their voice and there’s lots of reasons for that. But the main one is they don’t want to be left with this robotic voice,” Vaugh said.

Following the success the technology had for Foley, the family of Irish broadcaster Charlie Bird got in touch with the team. Bird revealed last year that he has been diagnosed with motor neurone disease and is losing his voice – but wants to be able to continue communicating with his family using the voice-banking technology.

As part of the discussion at Future Human, the audience got to see an exclusive clip from an upcoming documentary about Bird and this technology, which will air on RTÉ on 13 June.

Benefits and risks

Davey highlighted the importance of voice-banking technology for people who have conditions that impact their ability to communicate, as not being able to speak to their family can have a negative impact on their treatment.

“When people can’t use their voice, even a robotic one but particularly their own voice, they lose a lot of confidence. And when they lose confidence, they can often slide into depression and disengage from the rest of their treatment.”

The pair also said that the potential benefits of this technology go beyond motor neurone disease, and could also help people who have had a stroke. Davey’s company is in the process of applying for funding from Enterprise Ireland and the HSE to test this technology further.

Despite the clear benefits of voice-banking technology, Burke raised the issue of having synthesised versions of a person’s voice and the risks associated with that.

Davey said it is important moving forward that people have a way to control what happens to their voice after their death so there is no risk of abuse. Vaugh, meanwhile, mentioned the potential ethical issues surrounding the use of voice legacy technology after someone has died.

“There’s also the bigger thing like, you’re leaving the essence of someone to a loved one, is that good for them to have, to be able to type anything they want in their partner’s voice?” Vaugh said. “Does it affect the grieving process? We don’t know what happens longer term and all these have to be considered.”

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Leigh Mc Gowran is a journalist with Silicon Republic