Tech ethics | Top Tips | UX

5 times lived experience changed charity digital tools

When your charity is creating a solution that will exist to help a group of people, any notion of ‘us and them’ should be thrown out the window – along with any assumptions that could be relied on to shape the final product.

By Amy Johnson · April 19, 2022

“I can’t begin to imagine” is an off-the-cuff comment we’ve all probably said. Yet, the sentiment is valid. We can’t accurately feel or experience someone else’s relationships, problems, disabilities, or past. This is why, when building a solution for a societal challenge, lived experience is of the utmost value and often unearths essential nuggets of information that reshape your product in ways you really can’t imagine.

In short: listen to people with lived experience. Give them decision-making powers rather than just seeing them as a ‘focus group’ to bounce ideas off, a lot of the time, for free. More so than any digital experts or project consultants you may bring on board, they hold the most knowledge about the problem and therefore, the project.

Here are five examples that show lived experience as the lifeblood of a project. By listening to these often intimate insights, you aren’t barking up the wrong tree. Naturally, this leads to more efficient use of budget, and importantly a more useful solution for those that need it! 

Turn2Us 

Did you know that £20 billion of benefits sits unclaimed each year?

The barriers surrounding applying for benefits are plentiful. Factors like an online system, stigma, jargon, and the length of the process can all contribute to people abandoning their claims. So, how do you go about fixing that?

Turn2us, the national charity fighting poverty, partnered with us back in 2019 with the aim of creating a solution. The original thinking was that an app would be created to guide people through the daunting process of finding what benefits they are entitled to, and then trying to claim them.

People with lived experience of struggling with the benefits process were heavily involved from the get go. After a session where we spoke with these potential users of our solution, we learned that an app just wasn’t a good fit.

Rather than simplifying the process, it would have added even more unnecessary blockers. Having enough space on your phone to download an app, having a phone that even holds apps, possible data concerns, a new bit of technology to get to grips with… All these barriers were brought up by people who get it, and as a result, we were led down a completely different path.

a group of four people in discussion around a table
watercolour wireframe drawings

SMS was a better way to deliver this service. It aligned with the specific situations of those who needed the help, situations that we learnt lots about through the means of co-producing the project.

What we built together was Connect – an SMS service that links ‘Digital buddy’ volunteers with people who want to apply for benefits but need guidance through the process. Thanks to Connect, 80% of those who received support subsequently applied for benefits. Who knows how much lower that percentage could have been without that crucial lived experience insight.

National Ugly Mugs

White text, or black text? Blue background, or grey background? Red button or yellow button?

Choices like these may seem trivial, but can actually be the difference between life and death.

Back in 2013, Thomas Hall raped and assaulted four sex workers in Manchester. The existence of some kind of system that alerted the women of a dangerous man in the area would have saved these attacks from happening. In the wake of these attacks, the charity National Ugly Mugs (NUM) was adamant that tragedies like this should never happen again.

Partnering with NUM, we set off to create a solution that ensured just that. Co-designing with people with lived experience, we built an app called Safety Nets, designed to send out an alert to peers if sex workers felt threatened or in danger from a client.

Part way through the design phase, one of the sex workers told us, no frills, she wouldn’t use this app. Why? She is often working in low light, and the background on the app was white. This meant that opening the app would flood her face with light. This could potentially put her in more danger.

Of course, the app background was changed to black. Safety Nets went on to ensure the safety of sex workers in Manchester and beyond through the real-time alerts. That feat just wouldn’t have been possible without the input of the sex workers themselves through each stage of the app’s development.

a person holding a smartphone
a shot of manchester city centre

Migraine Trust 

How frustrating would it be to load up a website that’s been created to support you, only to discover that same website compounds the problems you’re facing?

When working with Migraine Trust on their new website, an insight from someone with lived experience meant we took steps to avoid doing just that.

You may have heard of ‘calm mode’ – a setting that reduces the brightness and saturation of colours on websites. One example of where it’s found is on sites made for people with autism, such as Autism.org.uk, to curb overstimulation.

Migraine Trust’s existing website didn’t have anything like this, but through interviews with people with experience of migraines, we found that bright colours were a common trigger for some of them.

Migraines are an awful experience to have to go through, with one person in the interviews reporting a nightmare scenario of a year-long migraine. The last thing we wanted to do was give someone an experience like that as they land on the website in their search for support.

As a precaution, we added in the calm mode for usability – ensuring no one looking for support with their migraines has to be wary of accessing a website in fear of exacerbating their situation!

Medicines for Children

Naturally, there’s a lot at stake when creating a medicine management app for parents of seriously ill children.

That’s why, when partnering with consortium Medicines for Children for their app design and development, we ensured at every stage that we worked alongside parents and carers living this reality every day.

The initial idea was to create a digital version of all the medicine information leaflets, while also providing solutions through the app to help the parents and carers manage the often complex medicine administration routines.

Through several intensive research efforts, including WhatsApp diary studies, it became clear that we’d missed out the most useful feature of this app for potential users. The parents and carers we spoke to, told us that their greatest challenge was communicating with other carers and healthcare professionals about their child’s medication.

close up of holding baby's hand
medicine routine

Therefore, it was clear that any digital solution we created also needed to be shareable. 

The app we built meant that support would literally be in carers’ hands whenever and wherever they needed it. These carers could record medicine needs safely, creating a clear log of all medicines, doses, and schedules. Automatic reminders would take the pressure off potentially forgetting a dose, and importantly, information could be easily shared with medical professionals and other carers.

Having lived experience involved from the word go meant we didn’t run the risk of getting to the end of the project and only then discovering whether (or not) the solution would actually change lives for the better.

Leonard Cheshire

Together with disability charity Leonard Cheshire, we developed a tool called ‘Together as One’.

Together as One supports people with complex disabilities to pool their personal independence payments in order to purchase more impactful, community focused support. 

When doing so we met Shaun.

Shaun is an expert on this project, a man with lived experience who we asked to test the tool. Part of the service allowed Shaun to sign up for leisure activities to attend. On the proposed interface, next to each activity were a list of other service users, and a separate list of staff that would attend the scheduled activity. This resulted in content and information that became segmented, but Shaun told us that he didn’t understand the distinction between the groups of people.

It wasn’t a concern to him if someone was a service user or a volunteer. To Shaun, the people on the trip were ‘Paul who cheats at Bingo’ or ‘Jane who has the same birthday’. Once we knew this was not an important feature and actually may have impeded understanding, we could remove those distinctions and make the product more accessible for those using it.

a man at the Leonard Cheshire centre smiling

Going forward

Any research is better than no research – but doing it ethically to ensure you aren’t re-traumatising people with lived experience should be a focus.

As the old UX adage goes: you may know that your audience likes flowers, but leading with assumptions could mean you build them a vase when what they really needed was floral wallpaper.