Inclusive Health Tech Design; SMART Suit: Advanced Design Research for a First-of-its-kind Assistive Upper Body Exoskeleton for Children and Young People

When we lose the ability to walk, a wheelchair keeps us moving and independent, but no device currently exists to help when we lose the use of our arms.

For people living with progressive neuromuscular conditions like DMD* and SMA*, losing upper body function means losing the ability to feed yourself, put your hand up in class, or hug your loved ones. All important things that non-disabled people might take for granted.

Despite technological advances in other fields, there are a lack of devices and systemic solutions that address the life-changing impact of the gradual deterioration and loss of upper body function. Over the past 50 years of Inclusive Mobility Design, there has been a lack of true innovation to address this problem which has left people living with upper-limb disability to face barriers in work, education, and social life – the SMART Suit aims to finally change this.

In collaboration with two leading UK charities, Duchenne UK (DUK) and Spinal Muscular Atrophy UK (SMA UK), The Inclusionaries Lab at the University of Liverpool are to develop the SMART Suit – a first of its kind exoskeleton suit to help children and young people living with neuromuscular diseases to use their upper body and give back their strength, independence and dignity.

The Inclusive Mobility team at the Inclusionaries Lab are the design knowledge partner of the SMART Suit project, leading on advanced inclusive & human-centred design research for this innovative £1.25 million project which runs for 2 years, involves 3 partner organisations and 7 cross-sector collaborators and has already attracted major public and industry interest.

The SMART Suit is an ambitious and highly innovative HealthTech design and commercialisation project with the potential to significantly impact quality of life for a wide range of people living with neuromuscular diseases and disabilities, in particular Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA).

In 2022, the SMART Suit project was awarded a £1.25 million grant from the People’s Postcode Lottery Dream Fund (which recognise 1. Innovative, 2. Impactful and 3. Collaborative projects) to support the research, design and development of a revolutionary assistive device to enhance upper body movement for young people living with progressive neuromuscular diseases.

As well as the trio of partner organisations leading the SMART Suit project (DUK, SMA UK and The University of Liverpool Inclusionaries Lab), we have created a cross-sector collaboration with leading organisations across industry, academia and healthcare sectors (Figure 1) including expert clinicians, therapists and an enthusiastic community of lived experience experts with progressive neuromuscular diseases.

The Inclusionaries interdisciplinary and systemic approach to the project aims to ensure advanced inclusive and human-centred design principles are embedded in the SMART Suit, with the aim of changing the way that such assistive devices are described, perceived, defined, designed and delivered, to ultimately achieve transformative systemic impact in the field.

As the design knowledge partner, The Inclusionaries aim to make the collaborative and interdisplianry approach, processes and learning in this project as accessible and widely applicable to many other areas similarly in need of better more systemic solutions.

*DMD is a rare progressive muscle-wasting disease which typically affects young boys. Two families a week in the UK receive the news that their child has Duchenne Muscular Dystrophy. It affects c. 2,500 people in the UK and 300,000 worldwide. Children born with DMD lose the ability to walk in their teens, later they’ll lose the strength in their upper body, eventually it affects their heart and lungs. Life expectancy is late twenties to early thirties.

*SMA is a rare, genetic, neuromuscular condition affecting c. 1,300 people in the UK. One in 10,000 babies worldwide are born with a type of SMA. It causes progressive muscle weakness and loss of movement due to muscle wasting. There are different types of SMA and a wide spectrum of how severely children and adults are affected. Approximately 60% of babies born with SMA have Type 1, the most severe form of the condition.

Initial interviews, observations and proof-of-concept prototype testing with lived experience experts took place between October 2022 and April 2023. This included individuals with a neuromuscular condition such as DMD or SMA, as well as parents, caregivers and a selection of clinical experts.

To ensure a diverse and representative range of participants were included, The Inclusionaries team developed, refined and utilised an ‘Inclusive, Equitable and Creative Participant Engagement Framework’. The framework has three distinct aims;

1. To ensure design decisions based on real-world user research do not exacerbate inequalities.
2. To ‘design with equity’ from the outset, going beyond just tackling inequalities.
3. To maximise creative, generative and meaningful participant engagement, using design-driven participatory mindsets and methods.

The framework maps typically marginalised groups and highlights various personal and contextual considerations which could result in differences in lived experiences relating to having a neuromuscular disorder (i.e. age; gender; race; socioeconomic status; culture; attitude to non-essential participation; and geographic location).

The SMART Suit project is transitioning five core designerly ways (outlined above) to achieve a desired sustainable and systemic outcome.

Functionality -> Usability + Desirability

The first designerly way being addressed is ‘investigations’ which takes place at the very start of the design process and essentially lays the foundations for the rest of the project. Within our designerly investigations, we are taking extra care to capture not only the objective and quantitative functional requirements focused on key tasks the SMART Suit should fulfil, but also the subjective and qualitative requirements focused on meaningful and desirable experiences the SMART Suit should deliver for its wearers and how it should fit their lifestyle. This will ensure we focus beyond product functionality to make the SMART Suit as pleasurable and meaningful to use through advancing design usability and desirability.

User Requirements -> User Narratives

More critical to capturing the widest range of user requirements (desirability / usability / functionality), is to investigate, interrogate and understand the various and sometimes conflicting user & stakeholder narratives before starting to explore the realm of product specifications. As part of this investigation, we elicited trending narratives from the first round of user & stakeholder interviews and invited all project partners to map if/how they thought each identified narrative could/should be used within the design process or beyond.

Product focus -> System focus

The SMART Suit project also intends to transition the design process followed by ensuring ample time is spent with end users framing the problem/s from their perspectives before commencing problem solving. Rather than focusing on recording solely interventional outputs from the project (i.e. the end product) we are taking a systems design approach considering the wider ecosystem of products (e.g. wheelchairs and controllers), services and environments that would allow the SMART Suit system function as a whole, rather than a single siloed product.

We intend to document a range of contributions along the way including methodological elements which could be of use to those who want to follow a similar path in future or learn what did or did not work well at various stages of the project. This includes recording the challenges and opportunities involved in collaboration between an industry design consultancy, academic research organisations and third sector organisations. The project is also exploring the extended scenarios and periods of life the SMART Suit could be used in by various users.

The design process above visualises the five key stages which will be followed in the development of the SMART Suit. At each stage, we will ensure the incorporation of user & stakeholder narratives according to Figure 4, as follows:

(1) Acknowledging & capturing a diversity and plurality of user and stakeholder narratives;

(2) Negotiating & speculating narratives with the project team;

(3) Embedding & scaling the chosen narratives throughout the remaining design process and beyond the project onto wider context of HealthTech for CYP.

Nine of the top trending narratives identified through initial interviews with participants are listed on the cards below: