Tuesday 29 November 2011 was the darkest of days. On that day six years ago, my wife and I listened in stunned silence as we were given the news that our 13-year-old daughter, Issy, had a rare bone cancer called Ewing’s sarcoma.

That was the start of a year of treatment that involved six hospitals, 18 rounds of chemotherapy, numerous blood transfusions, a failed stem cell harvest, an operation to remove her sacrum and an eight-week NHS-funded trip to the US, where she received proton beam therapy.

We slowly learned a whole new vocabulary, now largely forgotten and one that I hope I never have to relearn.

Without doubt the reason why Issy is fit and well today, and has just celebrated five years cancer-free, is because the clinical care she received was second to none.

But that’s only half the story. While the care was excellent, she was given virtually no information about the people she would meet, the hospital environments she would be treated in or the technology and processes that would be used in her treatment.

What information there was, was directed at us as parents, which left my daughter feeling isolated and ignored. She was resistant to treatments because their purpose wasn’t explained to her beforehand and she was scared of going to hospital as she didn’t know what to expect. This lack of preparedness made her sceptical about the system and has coloured her opinion of health services to this day.

Of course, this experience isn’t unique to Issy. The provision of information for children to prepare them for hospitalisation is diabolically poor. Information is either aimed at parents or the very young. There is virtually nothing for children aged six and up.

I started trawling through academic papers to see what research had been done on the information needs of children going to hospital. I discovered that there is a lot and it all supports the common-sense assumption that patients who have a better understanding of what will happen experience reduced stress and anxiety, which can lead to better clinical outcomes.

The problem is that in a cash-strapped NHS, the long-term strategic health benefits and associated cost savings of giving our children the health information they need and deserve is eclipsed by the short-term pressure to cut expenditure.

I started to think about what I could do to address this information gap, not just for cancer patients like Issy but for any child about to go into hospital. I wanted to find a way of delivering health information directly to children in a way that would make them feel engaged, empowered and informed – while having fun at the same time.

I’m fortunate that in my day job I’m the managing director of a digital innovation agency called Corporation Pop. With funding from Nominet Trust and the NHS, my team and I have spent the past couple of years developing a mobile app that we hope will address some of the problems Issy experienced.

The app aims to reduce stress and anxiety by introducing children to hospital environments, staff and processes in a playful and informative way, using 3D augmented-reality models, an artificially intelligent avatar guide that supports conversational interaction and games that demystify complex technology.

We have just heard that we’ve been successful with a large funding bid. This will not only support the final push towards launch, but will also fund independent clinical research into the efficacy of our app – hopefully proving that if we can put information in the hands of children, using language they understand, we can reduce anxiety and improve clinical outcomes.

This has been a cathartic journey for me. Immersing myself in this project has allowed me to reflect on what my daughter went through without having to get too close to the painful memories. I’ve been able to use that experience to think about how we can help children embarking on a journey through the hospital system.

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