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The MND Association focuses on improving access to care, research and campaigning for those people living with or affected by MND in England, Wales and Northern Ireland.

Use this Guide if you are interested in using new technology to create a product for the people that your charity supports. It talks about how to involve the people that you help in designing a product, and how to collaborate with digital partners.

It also explains some of the challenges of connecting technology together and the benefits it led to for people with restricted movement.

Using eye-tracking software and generative AI to enable people with restricted movement to create artworks

Ideas for new digital products - like an app or a website - should come from the people who will use it. It should be designed to meet a real need that they have.

There are lots of ways to find out what the people your charity works with need. This is called user research. Ways to do user research include:

  • Asking people what challenges they have when trying to do things

  • Ask what they think about current digital products or services they use

  • Watching how people use an existing digital product (with their permission)

  • Looking at data about how people use existing digital services and tools

  • Giving people a chance to share their ideas for new products

  • Presenting ideas and asking people to give feedback

  • Interviewing staff, volunteers, or other people who work closely with the people that you help.

MNDA wanted to help people living with Motor Neurone Disease (MND) access technology that could benefit them.

They had a good understanding of some of the challenges faced by their community because they work closely with a panel of people living with MND (plwMND). The digital team regularly talks to the panel about the issues they face. They turn those issues into “problem statements”, which can be used as a starting point to develop new products and services.

Because MND affects people’s ability to move and to speak, people living with MND can struggle to communicate their thoughts and feelings. They may not have opportunities to express themselves creatively, or use art as a way to reflect on their experiences.

AI tools which allow people to generate artworks are developing rapidly and have become widely available in recent years. But they have not been developed to meet the accessibility needs of communities like those with MND.

A company called AREA 23 approached MNDA with the idea to make AI art generation accessible for people living with MND.

MNDA consulted their panel of people living with MND, who said that they liked the idea.

With any new technology it’s important to find digital partners that you trust to guide you.

You might want to think about:

  • if their fees fit with your budget

  • their experience working with AI

  • charity sector experience

  • company ethics

  • commitment to accessibility

  • what ongoing support will be available

  • work and communication styles.

Ask people to explain anything you don’t understand and don’t be afraid to ask questions. If an agency or developer makes you feel foolish for not understanding something you probably don’t want to work with them.

Think about how it will be to work together. Choose a digital partner or partners that you feel you can collaborate with as equals.

MNDA holds a regular event called NextGen Think Tank. The event brings together experts from the charity, representatives of big tech companies such as Google and Microsoft, and people living with MND.

Using the “problem statements” created by their panel, MNDA invites tech companies to propose ideas for solutions. This helps them make sure that the ideas people put forward will actually be helpful for people living with MND.

AREA 23 knew a lot about generative AI tools. But MNDA understood that the project would need other skills and knowledge to make the tool accessible for their community.

The charity had previously worked with an assistive technology company called Smartbox, who specialise in Augmentative and Alternative Communication (AAC). AAC  includes communication aids that people can use instead of speaking (or as well as) to help others understand them. MNDA approached Smartbox to ask them to join the project.

Establish a project team including people from your charity and your digital partners.

If you can, directly involve people who use your services or have lived experience of the issues you work on. Ensure that they are fully supported to take part. This might mean:

  • offering payment for their time and expenses, for example childcare or transport

  • adopting communications tools or styles that suit them

  • taking time to explain new concepts and terms

  • meeting in places or at times that fit their schedule.

Agree how your project team will work together and how you will communicate. Be patient. Respect everybody’s experience and expertise. You might want to write down a shared vision or goal, and make a note of how you will measure your success.

The MNDA created a project team, involving people from:

  • the charity

  • AREA 23

  • Smartbox

  • people living with MND.

Everyone involved saw themselves and each other as equal partners. Different people brought different types of expertise to the project and respected each other.

The team held weekly progress meetings. They established good working relationships and ways to communicate with each other. This was key to the project’s success.

Get feedback on your concept. Try to identify specific ‘use cases’. Why, when, and how would a person need to use it?

Adopt an iterative approach to designing the product. This means:

  1. Turning early designs into a simple mockup or prototype.

  2. Asking the people who use your services to test it and give you feedback.

  3. Listening to what they say to find things that could work better.

  4. Making another prototype which includes those changes. Then testing that too!

Keep repeating this cycle until you’re sure that your product will work well for the people who are going to use it.

A screenshot from Mind's Eye

Many popular generative AI tools are inaccessible to people living with MND or other health conditions or disabilities.

Smartbox had previously made an app called Grid 3 which allows people to control actions on a screen in different ways, including:

  • touch

  • pointing

  • using a switch

  • moving their eyes.

The main technical challenge was linking the AI Art generating technology with the Grid 3 interface. This allowed people to use eye gaze, a switch, or a keyboard alone to enter prompts to the AI tool and choose from different art styles.

People living with MND were involved throughout as part of the project team, and to test and give feedback on the app. They did this via regular meetings. The project team also set up a WhatsApp group so they could share their thoughts and ask questions at any time. This led to lots of useful insights.

As MND is a progressive disease, they shared the app with people living with MND at different stages of progression.

When your product is ready to launch, think about how you will share it with your community.

If it is new technology you may need to offer extra support such as:

  • videos or other content which explains what the new technology is

  • training sessions for your community, including volunteers and staff

  • step by step instructions in accessible formats

  • access to modern digital devices and software, if your product relies on these.

Think about how you will keep up with changes and update your product as the new technology continues to evolve.

How prompting works in Mind's Eye

After a year of design, development, and testing, MNDA's accessible AI art generation tool was ready.

They named it Mind’s Eye. Since it launching it has been popular and has had very positive feedback. People living with MND have found that being able to make art using AI has helped them to:

  • communicate more clearly

  • express themselves creatively

  • share their emotions

  • reflect on their experiences.

Mind’s Eye also helps people living with MND remind other people that they still have the awareness, competencies and thinking skills as they have always had, even if they aren’t able to speak.

Generative AI technology is a fast-moving field, and MNDA hopes that the gains AI offer are accessible to everyone.

Further information