If ever there was an accessibility-related project to demonstrate the power of user-led design and what can be achieved when major technology giants pool their resources together alongside patient advocacy groups then I Will Always Be Me is surely it.
Launched earlier this year, the collaboration between Intel, Dell, Rolls-Royce and the U.K.-based Motor Neurone Disease Association is an attempt to address one of the most heartbreaking and disabling symptoms of ALS – the loss of one’s voice.
As the paralyzing neurodegenerative condition which gradually deteriorates muscular nerve cells progresses, the vast majority of patients go on to lose their voice – with around 80% of patients eventually relying on an electronic communication device and a synthetic voice.
Though 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.
Key amongst these is the amount of time it can take the patient to read out a sufficient number of phrases to create a large enough database of words, sounds and vocalizations to enable the software to accurately replicate their voice.
This can run into the thousands and given the emotional and physical turmoil most patients experience upon receiving an ALS diagnosis allied to the requirement for specialist recording equipment – it isn’t uncommon for patients to 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 – enabling ALS patients to bank their voice within 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 may only have a few years left to live but the power and significance of the words contained therein.
Older voice banking systems necessitated patients reading out meaningless words and phrases like “red lorry, yellow lorry” in order to create the custom digital version.
Instead, I Will Always Be Me achieves the same via a series of touching and beautifully crafted observations penned 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 on the difficult road ahead to their loved ones.
These challenges aside, the book reminds everyone that a zest for life remains because, when all is said and done – ‘I Will Always Be Me.’
The spark for the project came from Stuart Moss Head Of IT Innovation at Rolls Royce whose father passed away on Christmas day 2014 following a short battle with ALS or motor neurone disease as it is also referred to.
Witnessing patients struggling with older voice banking systems, Moss wondered whether he could help build a think tank comprised of major technology companies, the contacts of which he possessed through the Rolls Royce supply chain, and the expertise of the Motor Neurone Disease Association, to create something better.
The result of Moss’s entreaties was the creation of the MND Association Next Generation Think Tank in 2019 with Intel, Dell Terchnologies, Rolls Royce and the U.K.-based charity as its founder members.
The involvement of the technology heavyweights opened boundless avenues of opportunity. It was, in fact, the creative agency representing Dell and Intel – New York-based VMLY&R – who 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 went on to win the prestigious Pharma Grand Prix at this year’s Cannes Lions festival for the creative industries.
Dell Technologies assisted in building a network of technologists, creatives and speech therapists to assist in 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 to the table a third-party assistive technology partner in the shape of U.K.-based SpeakUnique who specialize directly in voice banking systems.
SpeakUnique’s technology uses a machine learning algorithm to accurately replicate the reader’s voice in as little as 20 minutes.
At a later date, when synthesized speech becomes necessary, any sentence the user wishes to enunciate can be output to a communication device as a precise digital mirror, or perhaps more appropriately in this context, an echo of the original voice.
The speed of the process is achievable due to SpeakUnique already using a “base 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.
The book, which additionally features illustrations by award-winning artist Nicholas Stevenson, is an emotional rollercoaster, 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 out different phrases it can be hard going with respect to fighting 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 gets to decide how fast or slow changes happen, or which parts of our bodies will change first, while other parts are staying the same,” reads one user.
“We just don’t know why this happened to me. Every so often, these kinds of changes run in families. But mostly, it’s just something that happens and we don’t know why. It doesn’t feel fair. But that’s the way it is,” adds another.
The book continues with more observations on what a future with MND looks like:
“I might not do all the things I used to do. I might not move exactly the same. I might not sound exactly the same. And we might not get to tell our stories and dream our dreams together as long as we want to.”
“But, right now, I am here with you which is my favorite place to be.”
“Yes, everything is changing, 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 phrases themselves serve a secondary purpose.
Explaining, in the campaign video, how this exquisite blend of art and technology manifests, Alice Smith CEO of SpeakUnique said:
“The process of reading the book brings out lots of different emotions in people and having sensitive parts and humor and some questions means that you get more of your natural self coming through in the synthetic voice.”
It is a point underscored by Nick Goldup, Director of Care Improvement at the MND Association, who admits in an interview, “There was always that danger that we could have got this seriously wrong.”
He continues, “We could have created something that was too emotional and after all, the end goal was to record a voice. If somebody breaks down halfway through, we weren’t going to achieve 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.”
Working continuously alongside patients and speech therapists within an iterative process – the project is a triumph for user-led 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 that you never got around to before it’s too late and not be sat for hundreds of hours recording your voice.”
Since its launch earlier this year, over 72% of patients newly diagnosed with MND or ALS have been using I Will Always Be Me to bank their voice but the technological collaboration will not end there.
Now the acoustics and accuracy of the synthetic representation have been fine-tuned and finessed, attention will turn towards input speed – with Intel in particular actively engaged in initiatives around touchless computing and language prediction.
Zooming out to view the bigger picture – I Will Always Be Me shows what can be achieved when major companies, the third sector, creatives and medical specialists work together to solve a huge problem, albeit one affecting a relatively small number of people.
“I Will Always Be Me is a great example of industry collaboration, which I believe is going to be vital for the future of making more inclusive accessible technologies,” says Darryl Adams, Intel’s Director of Accessibility.
This is extremely important.
A major impediment to breakthroughs in assistive technology is that such medical-related issues are technically complex to solve but lack R&D investment due to not having mainstream applications.
Any supply chain, networking and investment heft that can be brought to bear by major technology collectives such as this is most welcome.
Other assistive technologies in dire need of funding and collaboration such as electronic sight enhancement glasses for people with low vision or the development of mechanized exoskeletons for individuals with spinal cord injuries could learn much from this ethos of partnership and co-design.
A future echo of this resonates in the words of Stuart Moss at the climax of the campaign film – “If we can harness what we’ve started – the world can be different.”