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How This Storybook Revolutionised Voice Banking for People with Motor Neurone Disease


LBB’s Ben Conway speaks to representatives from VMLY&R, Dell Technologies and Intel about the innovative collaboration that has made voice banking easier for people with MND

How This Storybook Revolutionised Voice Banking for People with Motor Neurone Disease

Motor neurone disease (MND) is a rare neurological condition that progressively affects the brain and nerves, causing muscle weakness and resulting in difficulties with movement, speech, swallowing and breathing. The condition is incurable and, understandably, can be an extremely difficult time for the families of people with MND too - especially when a loved one has their voice taken away.

Voice banking technology has existed for some time now, allowing people with MND to create a synthetic voice that resembles their own and can be used in digital speech software after they lose the ability to speak independently. Whilst it has been available, VMLY&R NY CCO, Wayne Best, explains that only 12% of people in the UK diagnosed with MND go through with it. So, approaching VMLY&R for a collaboration, Dell Technologies and Intel - long-time partners of the Motor Neurone Disease Association (MNDA) - identified that the existing voice banking technology was too complicated and partnered with the aforementioned organisations and Rolls Royce to transform the process.

The Dell and Intel teams were inspired by the story of Stuart Moss (head of IT innovation at Rolls Royce) and his father, who passed away due to MND, and partnered with the MNDA to use their technological capabilities for good. Using the skills of New York Times bestselling author Jill Twiss and combining them with Dell and Intel’s technology (aided by SpeakUnique), VMLY&R created a story book that allows people with MND to read aloud, connect with their loved ones and bank their voice easier and faster than ever before.

To discuss how the technology was developed, what you need to include in a storybook voice bank and creating the emotional documentary for the campaign, LBB’s Ben Conway spoke with Wayne Best, VMLY&R NY’s chief creative officer, Liz Matthews, Dell’s SVP, global brand and creative, and John Coyne, Intel’s VP/GM, brand, creative & media.

LBB> How did everyone get involved with this project and create the initial concept?


Wayne> In 2020, Dell Technologies and Intel came to VMLY&R with a brief to find a way to get more people living with Motor Neurone Disease (MND) to bank their voices. Because even though voice banking technology was available, only about 12% total of people with MND in the UK actually went through with it. The process was just too long, too hard and too clinical.

Liz and John> In 2019, we had partnered with Rolls-Royce to provide laptops to the Motor Neurone Disease Association (MNDA) to help people bank their voices. Out of that relationship, an idea sparked to do more. In late 2020, Dell and Intel briefed VMLY&R on bringing to life a transformative story and settled on voice banking for people with MND, helping highlight this partnership and the power of technology for good. Stuart Moss, the head of IT innovation at Rolls-Royce, leads the Next Gen Think Tank - of which, both Dell Technologies and Intel are members. He was the catalyst that inspired this project because his father passed away from MND and he has a passion for helping people with the disease. The MNDA are the subject matter experts and we relied on them for guidance to make sure that what we were creating was truly going to be helpful and transformative for people with MND and their families. 



LBB> How did the idea for a storybook voice bank come about? How did you develop the idea into the product we see now?


Wayne> We knew one of the biggest hurdles to voice banking was the process itself. It was long, arduous and clinical. People living with MND have to read up to 1,600 random phrases, alone in a room. It can take weeks to complete. So we wanted to make the whole thing easier and more meaningful. We came up with the idea of creating a book because we could write the story to help people express to loved ones what they’ll be going through.

Liz and John> One of the hardest experiences for people with MND is telling their loved ones about their diagnosis. We liked the idea of a book as an experience that makes it easier for people living with MND to tell loved ones about their diagnosis, while reading the phrases needed for voice banking technology to process their digital voice.

Wayne> The idea we see now came about because we had to make the book available seamlessly and it also had to be tied to the voice synthetisation technology. A lot of thought and work went into making this work for our audience. We worked with New York Times best-selling author, Jill Twiss, and award-winning illustrator, Nicholas Stevenson, to create it. Then we figured out how to make sure the text contained all the words and syllables necessary to recreate the reader’s unique voice. The best part is: the book takes less than 30 minutes to read.


LBB> How was it working with Jill Twiss and Nicholas Stevenson? Why were they ideal for this project?


Wayne> We chose Jill Twiss because we wanted to work with an author who knew how to take complicated subjects and simplify them without losing the necessary emotion. And we worked very closely with her in developing the story. We also made sure to keep our experts at the MNDA and the people living with MND themselves involved. This collaboration resulted in developing the theme of the book: ‘I Will Always Be Me’. It seemed to perfectly capture what people with MND wanted their friends and family to understand.

We selected Nicholas to do our illustrations because we felt his style fit perfectly with Jill Twiss’ writing. There’s a beautiful, whimsical tone to his art. And his illustrations feel relevant and inclusive to all the many different people who are affected by this disease. So anyone who reads it could see themselves reflected in the story. We worked very closely with him – and people with MND – to make sure the book and the website visually spoke to our audience.

Liz and John> With Nicholas’ help, we were able to ensure that the illustrations were representative of the wide range of different types of people and families affected by the disease so that everyone who reads the story finds it true to themselves. When one of the real people we partnered with for testing the site read the book with his daughter, she even pointed out the similarity between her family and the illustration of a girl helping a man put on a hat because her dad has the same hat.


LBB> What things were there to consider when creating a campaign and technology for people with MND? Did you consult with the MNDA or use focus groups to identify them?


Liz and John> The MNDA was heavily involved as a consulting partner through the entire process to ensure that every piece of the experience was tailored to the needs of people with MND. They also helped bring in real people with MND to test the story, design of the site, and ultimately the recording experience. Nick Goldup, director of care improvement, and Richard Cave, a speech-language therapist at the MNDA, brought their expertise from working first-hand with people living with MND through the voice banking process with prior technologies. With their input, ‘I Will Always Be Me’ was tailored to improve all of the pain points experienced in other methods of voice banking by decreasing the amount of time required for the process, including the option to take as many breaks needed, and bringing in an emotional connection that respected and honoured their unique journey.

Wayne> At least 80% of people living with motor neurone disease will lose their ability to communicate to some extent and for many, this can happen rapidly. With this in mind, it was critical for us to make this experience something that they could easily complete as early as possible after their diagnosis to preserve their digital voice for use later. MND can also make things like speaking for long periods of time or clicking through a website very exhausting, so we designed the voice banking experience of reading the story on the site to allow for frequent breaks and take as little time as possible to complete, along with the ability to listen to and re-record individual pages as needed.

The disease is incredibly emotional, but many who are living with it find it hard to share their experiences with their loved ones. We wrote the story to help provide some of the words to share what they’re going through while providing the practical outcome of voice banking. Every person’s recording is also downloadable to serve as a keepsake for them and their family.


LBB> How does a storybook need to be designed to be optimal for voice banking? And why write the story about living with MND, not another unrelated topic?


Wayne> Prior voice banking methods lacked any meaningful connection and made an already difficult process very isolating. By writing the story about the experience of having MND, people could read it aloud to their loved ones, and share what they’re going through. The 20-30 minutes spent reading the story would also hopefully help MND patients begin to have a more meaningful dialogue with their friends and family about what the future holds.

Our voice banking partner, SpeakUnique, was closely involved with shaping the book. They helped us ensure that the text contained all the necessary sounds and syllables and cut the overall time to less than 30 minutes – a vast improvement over the old model.

Liz and John> All the partners – Dell, Intel, VMLY&R, the MNDA, author Jill Twiss, and SpeakUnique – worked very closely to guarantee that the phrases contained in the story and the method for recording a user’s voice would still provide all the necessary data to develop a strong digital voice. After testing, we even found that the variation in tone that comes from the emotional experience of reading the story actually makes for an even more authentic voice than other voice banking methods. We overcame most challenges with sheer passion for the project. Everyone was determined to get it right. It took a village, but everyone pulled together different areas of expertise to make it happen.


LBB> How did Dell and Intel develop the necessary technology for the book?


Liz and John> It took 15 months from inception of the project to launch in the UK. While the voice banking technology to create a digital voice already existed, the effort to evolve the prior technology into ‘I Will Always Be Me’ required extended time to find the right partners, consult with people living with MND, and test the experience to make it as useful as possible. The development team worked very rapidly once the concept was approved, so that portion took only about 3 months.

We partnered with SpeakUnique to evolve the existing technology into the improved experience we have today. The prior process of reading thousands of random phrases was replaced by recording a person’s voice reading the story on the site. From there, SpeakUnique uses its existing technology to extract specific sounds from the recording and align them with pre-written text. An algorithm then extrapolates unique voice characteristics (and based on gender, age, accent, etc.) to create a synthetic voice that can be installed on an assistive speech technology device.



LBB> The documentary is very moving - how did it come about and how did you want to represent life with MND?


Wayne> We wanted to create a documentary to show how the book worked and to prove that it was relevant and valuable to our audience. We also wanted viewers to hear part of the story itself – so they understood it was written to be read aloud and that it was meant to help start a conversation with their loved ones. All the participants shown are real people with MND – and the ones who helped us throughout the development process. It was important to our team to show the wide range of different types of people and family units affected by MND. We worked closely with the MNDA to find participants that would give us that honest, thoughtful perspective from testing through to the documentary. We were lucky to find five families that were generous with their time and their hearts as we captured them interacting with the book and using their digital voice.


LBB> What were the Dell and Intel teams’ reactions to the finished storybook and then the documentary from VMLY&R?


Liz and John> The highlight of the process was the first time we heard people with MND read the story and we saw their reactions. The feeling was unforgettable. They sounded SO happy and grateful. This test/research confirmed that we were on the right track and doing the right thing. Anyone viewing the documentary was warned to have a box of tissues handy! The families that generously agreed to be filmed as they interacted with the experience made everyone involved feel again like the hard work was beyond worth everything we had put into it. Seeing the moments they shared together was priceless and incredibly moving.



LBB> What is the future for this technology and this project in particular? Are there plans to expand this globally or develop new ideas with this technology?


Wayne> Right now, the project is a pilot in the UK, but the hope is to expand to other regions and continue to improve the experience for people living with MND.


LBB> What was the hardest challenge you faced on this project and how did you overcome it?


Wayne> The biggest challenge was ensuring that ‘I Will Always Be Me’ would be an improved experience to pre-existing voice banking methods. We worked closely with the MNDA, SpeakUnique, and real people with MND to guarantee that this new method would be easier overall and bring loved ones together throughout the process.


LBB> Anything else to add?


Liz and John> This project is an innovative collaboration of Dell Technologies and Intel, in partnership with Rolls-Royce and MNDA, driven by a common purpose: bettering humanity, specifically to help improve the lives of people living with MND through the power of technology. ‘I Will Always Be Me’ is a beautiful example of how technology can make a real impact in people’s lives. And it was brought to life by the amazing team at VMLY&R, working with Jill, Nicolas, SpeakUnique, and several other partners to create and capture the beautiful experiences and stories.

Wayne> It was an honour to be a part of creating something as meaningful as ‘I Will Always Be Me’.  And we’re grateful for the support from all partners across Dell Technologies, Intel, the MND Association, Rolls-Royce, SpeakUnique, Jam3, and Borderland. We encourage anyone diagnosed with MND in the UK to visit to learn more and bank your voice as early as you can.

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VMLY&R, Thu, 10 Mar 2022 17:57:00 GMT