If ever there was an accessibility-related project to demonstrate the power of user-driven design and what can be achieved when big tech giants pool their resources alongside patient advocacy groups , then I will always be me surely it is.
Launched earlier this year, the collaboration between Intel, Dell, Rolls-Royce and the UK-based Motor Neurone Disease Association aims to tackle one of the most heartbreaking and debilitating symptoms of ALS – loss of voice.
As the crippling neurodegenerative condition that progressively deteriorates muscle nerve cells progresses, the vast majority of patients continue to lose their voice – with approximately 80% of patients eventually relying on an electronic communication device and voice synthetic.
Although voice banking for ALS, the practice of recording one’s voice to construct a synthetic digital approximation, has been available for many years, traditional methodologies for doing this are not without limitations.
Chief among these is the time it takes for the patient to read a sufficient number of sentences to create a database of words, sounds, and vocalizations large enough to allow the software to accurately reproduce their voice. .
This can number in the thousands and given the emotional and physical turmoil most patients experience when diagnosed with ALS, allied to the need for specialist recording equipment – it is not uncommon for patients take up to three months to complete the task.
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 – allowing ALS patients to bank their voices in minutes from the comfort of their home via an online portal.
What sets I will always be me apart, however, is not simply the precious time saved for patients who tragically have only a few years left to live, but the power and meaning of the words it contains.
Older voice banking systems required patients to read meaningless words and phrases like “red truck, yellow truck” in order to create the personalized digital version.
In place, I will always be me achieves the same via a series of touching and beautifully crafted observations penned by New York Times bestselling author Jill Twiss, which patients read aloud to explain some of the changes and challenges they are likely to face on the difficult road ahead for their loved ones.
These challenges aside, the book reminds everyone that there remains a joy in life because, ultimately, “I will always be me.”
The spark for the project came from Stuart Moss, Head of IT Innovation at Rolls Royce, whose father died on Christmas Day 2014 following a short battle with ALS or Motor Neurone Disease, as we also calls him.
Seeing patients struggling with older voice banking systems, Moss wondered if he could help create a think tank of big tech 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 Intel, Dell Terchnologies, Rolls Royce and the UK-based charity as founding members.
The involvement of tech heavyweights has opened up limitless possibilities. It was actually the creative agency representing Dell and Intel – New York-based VMLY&R – who came up with the idea of condensing the target sentences to be read aloud into a patient-centered, short-read e-book.
The promotional campaign I will always be me went on to win the prestigious Grand Prix de la Pharma at this year’s Cannes Lions festival for creative industries.
Dell Technologies helped create a network of technologists, creatives and speech therapists to participate in the venture, as well as donating laptops to MND to give to patients to record their voices.
For its part, Intel was able to leverage its decades of experience working on the open-source communications system used by the late Professor Stephen Hawking, while playing an instrumental role in establishing a technology partner in the industry. Third-party support in the form of UK-based SpeakUnique specializes directly in voice banking systems.
SpeakUnique’s technology uses a machine learning algorithm to accurately reproduce the reader’s voice in as little as 20 minutes.
At a later date, when synthesized speech becomes necessary, any phrase the user wishes to speak can be transmitted to a communication device in the form of an accurate digital mirror, or perhaps more appropriate in this context, of an echo of the original voice.
The speed of the process is achievable as SpeakUnique already uses a “base voice” formed 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 with custom variations.
The book, which also features illustrations by award-winning artist Nicholas Stevenson, is an emotional roller coaster, not just for patients and their families, but for any reader.
Quite simply, especially when listening to the recording on the website in which several patients read different sentences, it can be hard to hold back the tears.
“We don’t know how fast 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 will change, or which parts of our body will change first, while other parts will stay the same,” reads one user.
“We just don’t know why this happened to me. Once in a while, these types of changes happen in families. But most of the time it’s just something that happens and we don’t know why. It doesn’t seem fair. But that’s how it is,” adds another.
The book continues with further observations on what a future with MND looks like:
“I might not be doing everything I was doing before. I might not move exactly the same way. I may not have the exact same sound. And we may not be able to tell our stories and dream our dreams together for as long as we want.
“But, right now, I’m here with you, which is my favorite place.”
“Yes, everything changes, but I will always be me and I will always love you.”
Beyond simply allowing patients to eloquently convey these complex feelings to their loved ones, the emotionally charged nature of the sentences themselves serve a secondary purpose.
Explaining in the campaign video how this exquisite 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 sensitive parts and some humor and a few questions means you get more of your natural self through the synthetic voice.”
This is a point underlined by Nick Goldup, Director of Care Improvement at the MND Association, who admits in an interview: “There was always this danger that we could have been seriously wrong.
He continues: “We could have created something too emotional and after all, the end goal was to record a voice. If someone breaks down halfway through, we’re not going to achieve what we wanted. But what we’ve found is that you actually get a better recording capturing those raw emotions from 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 lived 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 technology available before was slow and time consuming. For people with MND, you want to use the time you have left to do the things you never did before it’s too late and not sit around for hundreds of hours recording your voice.
Since its launch earlier this year, more than 72% of patients newly diagnosed with MND or ALS are using I will always be me to cash in on their voices, but the technological collaboration will not stop there.
Now that the acoustics and accuracy of the synthetic representation have been refined and fine-tuned, the focus will turn to input speed – with Intel in particular actively engaged in initiatives around contactless computing and prediction of language.
Zoom out to see the larger image – I will always be me shows what can be achieved when big business, the third sector, creatives and medical specialists work together to solve a huge problem, even if it 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 making accessible technologies more inclusive in the future,” said Darryl Adams, Director of Accessibility at Intel.
It is extremely important.
A major obstacle to breakthroughs in assistive technologies is that these medical problems are technically complex to solve, but lack R&D investment due to the lack of consumer applications.
Any supply chain, networking and investment that can be leveraged by big tech collectives like this is welcome.
Other assistive technologies that urgently need funding and collaboration, such as electronic vision-enhancing glasses for the visually impaired or the development of mechanized exoskeletons for people with spinal cord injuries , could learn a lot from this philosophy of partnership and co-design.
A future echo of this resonates in the words of Stuart Moss at the film’s climax to the campaign – “If we can build on what we started – the world can be different.”