My Care Record: Creating digital solutions for owning your own story
The My Care Record project aims to create a digital tool, which can help young people to access their information and have their experiences accurately reflected when interacting with services.
The origins of the project started around the same time as the early days of the Independent Care Review.
At that time, Rowan Anderson, Programme Lead at Corra and commissioner and co-collaborator on the My Care Record project, joined the Edges of Care group, with her background focusing on children and families affected by drugs and alcohol. Around the same time, Corra was developing their work around listening through their Youth Advisory Panel, which made sure young people were inputting into organisational and funding decisions.
As part of that work, Corra launched a research programme called Everyone Has a Story. Rowan explains:
It was all about trying to understand children’s experiences of having a mum or dad with a drug or alcohol problem and what that meant for them. At the time it was quite revolutionary because it involved listening to children's voices and experiences.
Back then it was very uncommon to focus projects on listening to children’s firsthand experiences.
Surfacing the importance of third sector work and relationships
The research, and the follow up project Connections are Key, surfaced many of the things that would come to be part of the findings of the Independent Care Review.
We heard about the importance of third sector work, relationships and how children constantly have to tell their story again and again and again.
There were strong links between this work, the work of the Independent Care Review, and a clear need to connect the ideas around identity and ownership of one’s story across all the issues that can affect a child or young person’s life.
From here the My Care Record project began to take shape. Rowan said:
We described it as a digital backpack where you could hold all your stuff, so thinking about how you the individual hold your own story, and you make decisions about who sees what’s in your backpack and who doesn’t need to.
Adjusting to COVID-19
Then the challenges of the COVID-19 pandemic hit, and momentum shifted. The STV Children’s Appeal joined the project along with the Digital Health and Care Innovation Centre (DHI-Scotland) based at the University of Strathclyde to start looking at a tech solution to this challenge of holding and sharing data and stories that is first and foremost based in lived experience.
Rowan explained:
It was a slow start as we adjusted to the challenges of the pandemic. We used that time to speak to policy holders and multi-agency stakeholders to lay the groundwork.
We brought in Heather Coady, an independent consultant who had worked on the Independent Care Review. Heather was instrumental in making sure the work of the Independent Care Review was fundamental to the project work. Heather nurtured all the relationships between partners and spent time connecting people across the system, which became our oversight group.
The tech experts also spent a lot of time speaking with children and young people with care experience who helped them design this digital solution and had a say in what it might look like, what it might do, and what would be important for them to be included.
A tool based on three key concepts
Chaloner Chute, Chief Technology Officer for DHI, explains that they focused on three key concepts when building the tool. These include:
- Records of the past – how can I see my care interaction over time?
- Conversations about the future – how do I know what is coming up soon?
- About me – a profile that represents who I am and includes my own voice.
This will help with the practical elements of navigating systems, like providing proof of care experience, so that a young person won’t need to repeat their story to access support and entitlements. But it will also be for maintaining a child or young person’s story.
"A really disrupted childhood can mean you don't have pictures that you drew when you were little, or you don't have a story about the fact that you like peas and not beans when you were small. It's the really human parts that sometimes got lost along the care journey, which is what we were told during the Independent Care Review," said Rowan.
Chaloner is also clear that the goal is to create something that helps everyone who comes into contact with services and needs a place to access their information and reflect their own experiences to make those services better.
Chaloner said:
It would be easy for us to make an app for people with an experience of care, but one of our key objectives is to normalise the way this works and not make it be about having an experience of care.
It’s like saying ‘we've gone through this so we could make something really nice for people with that experience’ but it will then be a silo. It will bring its own stigma. And so, the bigger challenge is how do you work with what is already getting built for everyone to make it meet these needs?
A project built on billing and enthusiastic partnership
Collaboration and relationships have been essential to designing the tool with the need for different specialist skill sets from tech expertise to extensive knowledge of the ‘care system’ and local authorities to bring it to life.
Rowan says:
Bringing the right people together and keeping those relationships warm even when we had very quiet periods was essential. Working with partners like Who Cares? Scotland to get the voices of young people was vital as well. This 100% couldn’t have happened without willing and enthusiastic partnership.
Timing was also an important factor. Aberdeen City Council were already undergoing some changes when it came to their systems, and they had the flexibility to test how the tool could work. Now the team are looking at next steps.
Rowan explains:
The big challenges will come from how we take this idea, and proof that the idea can operate, into something truly operational. And that will take money and investment and will from some power holders to change systems.
How we shift the power is vital. How we can create the conditions where someone can be the voice of their own story, and that’s valued and impactful and not tokenistic.
The key will be finding a way forward that keeps people at the heart of everything.
This tool could have endless possibilities not just for the care experienced community but in all aspects of health and care and times when we all come in contact with these systems.