What if there was an accessibility-related project to demonstrate the power of user-driven design and what major tech giants can achieve when they pool resources together with patient advocacy groups? i am always me It is certainly so.

A collaboration between Intel, Dell, Rolls-Royce and the UK-based Motor Neurone Disease Association, launched earlier this year, is an attempt to address one of the most heartbreaking and disabling symptoms of ALS: loss of voice.

As a paralytic neurodegenerative condition progresses, in which muscle nerve cells gradually deteriorate, the majority of patients lose their voice, and eventually about 80% of patients rely on electronic communication devices and synthesized speech. will be

ALS voice banking (the technique of recording your own voice to construct a synthetic digital approximation) has been around for many years, but the traditional methodologies for doing this are not without limitations.

Key among these is the time it takes for a patient to read a sufficient number of phrases to create a database of words, sounds, and utterances large enough to allow the software to accurately reproduce the voice. is.

This can number in the thousands and is related to the need for professional recording equipment given the emotional and physical turmoil most patients experience upon receiving an ALS diagnosis. It is not uncommon for patients to take up to 3 months to complete the task.

i am always me is an elegant attempt to overcome these barriers by condensing the target phrase into a 1000-word book of the same name. It enables ALS patients to speak within minutes from their home via an online portal.

what to set i am always me But it’s not just the precious time saved for patients who tragically may only have a few more years to live, but the power and significance of the words they contain.

Older voice banking systems required patients to read nonsensical words and phrases, such as “red truck, yellow truck,” to create a custom digital version.

Instead, i am always me It accomplishes the same through a series of poignant and beautifully crafted observations written by New York Times bestselling author Jill Twyth.

These challenges aside, this book will serve as a reminder to everyone that the zest for life remains.

collective action

The project was sparked by Stuart Moss, Head of IT Innovation at Rolls-Royce. His father died on Christmas Day 2014 after a brief battle with ALS, also known as motor neuron disease.

When Moss saw patients suffering from an outdated voice banking system, he built a think tank made up of major technology companies he owned through Rolls Royce’s supply chain and the expertise of the Motor Neurone Disease Association. I wondered if I could help. what better

Moss’ pleas resulted in the formation of the MND Association Next Generation Think Tank in 2019, with Intel, Dell Terchnologies, Rolls Royce and a UK-based charity as founding members.

With the tech giants involved, the possibilities are endless. In fact, it was the creative agency representing Dell and Intel – his New York-based VMLY&R. It was he who came up with the idea of ​​condensing the phrases to be read into short, patient-centered e-books.

the campaign you are promoting i am always me At this year’s Cannes Lions Festival, it won the prestigious Pharma Grand Prix for the creative industries.

Dell Technologies has built a network of technologists, creators, and speech therapists to support the venture and donated laptops to the MND Association to enable patients to record their voices.

Intel has been able to leverage decades of experience working on open source communication systems used by the late Professor Stephen Hawking. Based in the UK, SpeakUnique specializes directly in voice banking systems.

SpeakUnique’s technology uses machine learning algorithms to accurately reproduce your voice in just 20 minutes.

Any sentence the user wants to say can be output to a communication device as an exact digital mirror when the synthesized speech is needed at a later date. In this context, it can be better output as an echo of the original speech.

The speed of the process is achievable because SpeakUnique already uses “basic voices” trained from hundreds of hours of recordings of speakers of different ages and different accents. This provides a platform for overlaying patient voices and blending personalized variations.

emotional reward

With additional illustrations by award-winning artist Nicholas Stevenson, the book is an emotional roller coaster for all readers, not just patients and their families.

Simply put, it can be difficult to hold back tears, especially when listening to recordings on websites of multiple patients reading different phrases aloud.

“I don’t know how quickly my body changes. Sometimes I feel that our bodies are very different very quickly. Other times it feels like nothing has changed.” No one can decide how fast or slow the changes will be, or which parts of the body will change first and other parts will remain the same,” read one user.

“I don’t know why this happened to me. Sometimes this kind of change happens in families. But most of the time it just happens and I don’t know why. But that’s right,” adds another.

The book continues with more observations about what the future of MND looks like.

“I may not be able to do all the things I used to do. I may not work exactly the same. I may not sound exactly the same. , we may not be able to tell our stories and dream together.”

“But now I’m here with you, my favorite place.”

“Yes, everything is changing, but I will always be me and I love you.”

Beyond simply allowing the patient to eloquently communicate these complex feelings to their loved ones, the emotional nature of the phrase itself serves a secondary purpose.

SpeakUnique CEO Alice Smith explains how this exquisite blend of art and technology manifests itself in the campaign video.

“The process of reading a book elicits a range of emotions in people. Sensitivity, humor, and some questions make synthetic voices convey more of their natural self.”

This is a point Nick Goldup, Director of Care Improvement for the MND Association, acknowledged in an interview, emphasizing that “there was always the danger of getting this seriously wrong.”

He continues: We can’t achieve what we wanted if someone breaks down in the middle. It means you can get it. ”

Through continuous collaboration with patients and speech therapists in an iterative process, this project is a triumph of user-driven design.

Alan Towart (pictured), who has had motor neuron disease since 2017, appeared in the campaign film.

he said: Before it’s too late to sit hundreds of hours recording your voice, people with MND will want to use the time they have left to do things they couldn’t do before. ”

Since its launch earlier this year, it has been used by more than 72% of newly diagnosed patients with MND or ALS. i am always me However, technical cooperation does not end there.

Now that the sonics and accuracy of synthetic representations have been tweaked and refined, the focus is on input speed. Intel, in particular, is actively working on initiatives in touchless computing and language prediction.

Zoom out to see the big picture – i am always me It shows what can be achieved when large corporations, third-sector, creative and medical professionals work together to solve big problems, albeit affecting relatively few people.

“i am always me Darryl Adams, director of accessibility at Intel, said:

This is very important.

A major obstacle to breakthroughs in assistive technology is the lack of mainstream applications and lack of investment in research and development, despite the technical complexity of solving such healthcare-related problems. is to be

We welcome the supply chain, networking, and investment burden brought by such a major technology collective.

Other assistive technologies in dire need of funding and cooperation, such as electronic vision-enhancing glasses for people with low vision and the development of mechanized exoskeletons for people with spinal cord injuries, are out of this spirit of partnership and co-design. you can learn a lot.

The future repercussions of this resonate with Stuart Moss’ words at the climax of the campaign film.