Motor Neurone Disease Association If ever there was an accessibility-related project to demonstrate the power of user-led design and what can be achieved when major tech giants pool their resources together with patient advocacy groups, then I Will Always Be Me is certainly it. this. The collaboration between Intel, Dell, Rolls-Royce and the UK-based Motor Neurone Disease Association, launched earlier this year, is an effort to tackle one of the most heartbreaking and disabling symptoms of ALS – the loss of voice. As the paralytic neurodegenerative condition that gradually deteriorates muscle nerve cells progresses, the vast majority of patients lose their voice – with around 80% of patients eventually relying on an electronic communication device and a synthetic voice. Although voice banking for ALS, the practice of recording one’s voice to construct a synthetic digital approach, has been available for many years, traditional methodologies for doing so are not without limitations. Key among these is the time it can take for the patient to read a sufficient number of sentences to build a large enough database of words, sounds and phonemes for the software to accurately reproduce their voice. This can run into the thousands and given the emotional and physical turmoil most patients experience when receiving an ALS diagnosis linked to the requirement for specialist recording equipment – ​​it is not unusual for patients to take up to three months to complete the work. I Will Always Be Me is an elegant attempt to overcome these barriers by condensing the target phrases into a 1000-word book of the same name – enabling ALS patients to put their voice down in minutes from the comfort of their home through an online portal. What sets I Will Always Be Me apart, however, is not just the precious time saved for patients who tragically may only have a few years to live, but the power and meaning of the words contained within. Older voice banking systems required patients to read meaningless words and phrases such as “red truck, yellow truck” in order to generate the customized digital version. Instead, I Will Always Be Me achieves the same through a series of poignant and beautifully crafted observations written by #1 New York Times bestselling author Jill Twiss, which patients read aloud to explain some of the changes and challenges they are likely to face in difficult times. road in front of their loved ones. Despite these challenges, the book reminds everyone that the zest for life remains because when all is said and done – “I will always be me”.

Collective action

The spark for the project came from Stuart Moss Head Of IT Innovation at Rolls Royce, whose father died on Christmas Day 2014 after a short battle with ALS, or Motor Neurone Disease as it is also referred to. Seeing patients struggling with older voice banking systems, Moss wondered if he could help create a think tank made up of major technology companies, whose contacts he had through the Rolls Royce supply chain and the expertise of the Motor Neurone Disease Association, to create something better. The result of Moss’ pleas was the creation of the MND Association Next Generation Think Tank in 2019 with founding members Intel, Dell Technologies, Rolls Royce and the UK-based charity. The involvement of tech heavyweights has opened up limitless avenues of opportunity. In fact, the creative agency that represented Dell and Intel – New York-based VMLY&R – came up with the idea of ​​condensing the target phrases to be read aloud into a patient-centered short-read e-book. The campaign promoting I Will Always Be Me won the prestigious Pharma Grand Prix at this year’s Cannes Lions festival for the creative industries. Dell Technologies helped build a network of technologists, creatives and speech therapists to help with the venture, as well as donating laptops to the MND Association to be given to patients to record their voices. For its part, Intel was able to leverage its decades of experience working on the open source communication system used by the late Professor Stephen Hawking, as well as being instrumental in bringing a third assistive technology partner to the table in the form of SpeakUnique based in United Kingdom specializing directly in voice banking systems. SpeakUnique’s technology uses a machine learning algorithm to accurately reproduce the reader’s voice in just 20 minutes. At a later date, when synthetic speech becomes necessary, any sentence the user wishes to speak can be output to a communication device as an exact digital mirror, or perhaps more appropriately in this context, an echo of the original voice. The speed of the process is made possible by SpeakUnique already using a “master voice” trained from hundreds of hours of recordings of speakers of different ages and with different accents – providing a platform to overlay the patient’s voice and blend in the personalized variations.

Emotional payoff

The book, which includes additional illustrations by award-winning artist Nicholas Stevenson, is an emotional rollercoaster, not only for patients and their families but for every reader. Quite simply, especially when you listen to the recording on the website in which many patients read different phrases, it can be difficult to fight back the tears. “We don’t know how quickly my body will change. Sometimes our bodies feel very different very quickly. And sometimes, it can feel like nothing has changed at all. No one can decide how fast or slow the changes happen or which parts of our body will change first while other parts stay the same,” says one user. “We just don’t know why this happened to me. Every now and then, these kinds of changes happen in families. But mostly, it’s something that happens and we don’t know why. It doesn’t feel fair. But that’s how it is,” adds another. The book continues with more observations about what a future with MND looks like: “I may not be doing all the things I used to do. I may not move exactly the same. I may not sound exactly the same. And we may not get to tell our stories and dream our dreams together as much as we want to.” “But, right now, I’m here with you which is my favorite place to be.” “Yes, everything changes, but I will always be me and I will always love you.” Beyond allowing patients to eloquently convey these complex feelings to their loved ones – the emotionally charged nature of the phrases themselves serves a secondary purpose. Explaining, in the campaign video, how this extraordinary blend of art and technology manifests itself, Alice Smith CEO of SpeakUnique said: “The process of reading the book brings out a lot of different emotions in people, and having touch points and humor and some questions means you get more of your natural self with the synthetic voice.” It’s a point made by Nick Goldup, Director of Care Improvement at the MND Association, who admits in an interview, “There was always a risk we’d got it seriously wrong.” He continues, “We could have created something very emotional and ultimately the end goal was to record a voice. If one breaks down halfway through, we wouldn’t have achieved what we wanted. But what we found is that you actually get a better recording by capturing those raw emotions of a person’s voice.” Continuously working alongside patients and speech therapists in an iterative process – the project is a triumph for user-driven design. Alan Towart (pictured) has been living with motor neurone disease since 2017 and appeared in the campaign film. He says, “This project is important to me because one day I may need it to help me and the previous technology available was slow and very time consuming. For people with MND, you want to use the time you have left to do the things you never had before and not sit for hundreds of hours recording your voice.’ Since its launch earlier this year, more than 72% of patients newly diagnosed with MND or ALS use I Will Always Be Me to exchange their voices, but the technological collaboration won’t end there. Now that acoustics and the accuracy of synthetic representation have been improved and refined, attention will turn to input speed – with Intel in particular actively involved in initiatives around touchless computing and language prediction. Zoom in to see the bigger picture – I Will Always Be Me shows what can be achieved when big companies, the third sector, creatives and medical experts work together to solve a huge problem, albeit one that affects a relatively small number of people. “I Will Always Be Me is a great example of industry collaboration, which I believe will be vital to the future of creating more inclusive accessible technologies,” says Darryl Adams, Director of Accessibility at Intel. This is extremely important. A major barrier to innovations in assistive technology is that such medical-related issues are technically complex to solve, but lack R&D investment due to a lack of mainstream applications. Any supply chain, networking and investment burden that can be shouldered by large tech collectives like this is welcome. Other assistive technologies in dire need of funding and collaboration, such as vision-enhancing electronic glasses for people with low vision or the development of mechanized exoskeletons for people with spinal cord injuries, could learn a lot from this ethos of collaboration and co-design. A future echo of this is echoed in Stuart Moss’s words at the climax of the campaign film – ‘If…