AboutMi: Helping people be seen heard and understood

How a digital communication passport can help people have greater ownership of their story – and help others understand what really matters

Imagine having to explain the most important things about yourself again and again.

How you communicate. What makes you anxious. How somebody can tell when you're in pain. What helps when you're overwhelmed. The things that are important to you. Your health needs. Your routines. The people who matter in your life.

Now imagine having to do that at precisely the moment when you're least able to communicate it.

For many people with learning disabilities and complex communication, health or support needs, this isn't hypothetical.

It's part of navigating health, social care, education and other services. It's one of the reasons we created AboutMi.

More than information

Communication passports aren't a new idea.

At their best, they give professionals and others supporting someone important information about the person in front of them – particularly where that person may communicate, experience the world or express their needs differently. But too often that valuable information still lives on paper, in folders or within individual organisations.

Information can become outdated. Different versions can exist in different places. It may not be available when somebody moves between services or encounters a professional who doesn't know them. And the person whose life it describes can have surprisingly little ownership of it. We wanted to explore whether technology could do something better. Not technology for technology's sake, but technology designed around a very human question:

How can we make it easier for somebody to be seen, heard and understood?

Why getting this right matters

This isn't simply about convenience. People with learning disabilities continue to experience significant health inequalities.

They are also considerably more likely than the general population to be prescribed some types of psychotropic medication. National programmes such as STOMP have highlighted the importance of understanding the person holistically, including their physical and mental health, communication, behaviour, environment and the perspectives of people who know them well.

Behind what can sometimes be described simply as "behaviour" there may be pain, anxiety, sensory overload, frustration, fear, a change in environment or a communication need. Knowing the person matters. And having good information available to the people making decisions matters too.

Creating AboutMi

AboutMi is a digital communication passport that brings important person-centred information together securely in one place.

It can include information about communication, health, relationships, social and environmental needs, behaviour, preferences, routines and the things that are important to and for the individual. But from the beginning, we knew the content was only one part of the challenge.

How AboutMi was designed mattered too. So we co-produced it.

People who use communication passports have helped shape it. Families have been involved. Professionals who support people and need to use this information in practice have contributed too.

They've challenged us, tested things and helped us understand what works and what doesn't. And accessibility has been considered from the ground up rather than treated as an additional feature to add once everything else was finished.

Giving people greater ownership

One of the things we’re particularly passionate about is moving away from information being something that is simply written about somebody. Wherever possible, people should be able to participate in creating, changing and owning their own information. That's why we've continued to invest in making AboutMi easier to use independently.

Our latest release includes speech-to-text functionality throughout, meaning someone who finds typing difficult may be able to speak their information instead. It sounds like a relatively small technology feature. But if it enables somebody to contribute to their own passport rather than requiring another person to do it for them, it isn't small at all.

It's about agency.

Information when it really matters

We've also been thinking carefully about sharing. Digital information needs to be secure. People shouldn't automatically have access simply because they are a professional. But there are also situations where making the right information available quickly is incredibly important.

An emergency hospital admission is an obvious example. Someone may suddenly find themselves in an unfamiliar environment, surrounded by people who don't know them, perhaps frightened or unwell and less able than usual to communicate what they need. With our latest development, appropriate new people can be approved for temporary access to key information within someone's AboutMi passport.

That could help a professional understand how somebody communicates, recognise signs of distress, know what adjustments might help or access other important information without relying on somebody to retell everything at an incredibly difficult moment.

That's when a communication passport stops simply being a record and starts becoming a practical tool.

And now we're seeing it in use

Perhaps the most rewarding part of developing AboutMi has been seeing people actually use it. We're receiving fantastic feedback. Services are telling us it can save staff time and make information easier to maintain and share. Professionals are able to access useful information about the person they're supporting. And people with passports are engaging with them – navigating them, updating information and taking greater ownership of what is recorded about their lives.

That last part is particularly important to us.

Because success isn't simply replacing a paper document with a digital one. If all we'd done was digitise the same process, I don't think we'd have gone far enough. The opportunity is to change the relationship people have with their information.

Technology with humans at its centre

AboutMi reflects something we believe strongly across all of our work at Here2there. Technology should start with people. Not:

“What can this technology do?”

But:

“What are people trying to do, what gets in their way, and could technology make that better?”

Sometimes the answer will be no. Sometimes the best solution won't be digital at all. But when technology is designed with the people who will actually use it, it can remove barriers, create connections and give people greater voice and control.

That's what we're trying to achieve with AboutMi.

We'll keep developing it. We'll keep listening to the people using it. And I'm certain they'll keep telling us where we can make it better. Because ultimately, AboutMi isn't really about communication passports.

It's about people.

And making it a little easier for every person to be:

Seen. Heard. Understood.