Lost in the Maze: A Parent’s View of Healthcare Data

By Lucy Patten

When you are the parent of a child with a rare condition, you learn very quickly that nothing in healthcare exists in one place. Not the appointments, not the professionals, not the decisions and certainly not the data. Everything is scattered across systems, people, hospitals, inboxes, and, more often than not, loose bits of paper that fall out of the lever arch file I’ve built up over years.

I am a full time working parent and carer to my son, who has Duchenne Muscular Dystrophy, and my daughter, who is autistic and non verbal. Between them, our lives span multiple hospitals, local authorities, education settings, and specialist teams. Each holds a slice of the truth, but none holds the whole picture, because that responsibility is left to me. All of this happens while my husband and I work full time, juggle family life, and try to keep everything else afloat.

To add further complexity, we live in Newport, receive specialist care in Cardiff, and make a 600 mile round trip to Newcastle every month so my son can participate in a clinical trial. When you’re a parent who has to advocate for your child in every hospital setting, across different health boards or even national borders, you absorb a whole layer of expertise almost overnight. You learn pretty quickly not to mix up milligrams and millilitres, how to distinguish enzymes from platelets, and you memorise medication names that sound like they’ve been lifted from a Latin textbook. You become the living, breathing manual for your child’s care.

And behind every missing piece of data is a real human cost. An exhausted child pleading not to have another blood test that was already done a few days earlier by a different health board. And an exhausted parent, who has to explain – again – to their employer why they need yet another afternoon off for yet another appointment.

Families stretched thin because the system cannot remember what it already knows.

But what makes this fragmentation even more striking is how sharply it contrasts with the rest of my life. I live in a world where almost everything is at my fingertips. I can open my phone and instantly see how many calories I consumed at breakfast. I can track my steps, my sleep, my heart rate, and even the temperature of my bedroom without thinking twice. Even at work, I rely heavily on dashboards and systems that surface key metrics, spot trends, and help me make informed decisions.

Yet if I want to know something as basic (and clinically important) as my son’s iron levels, I’m back rummaging through that same overstuffed lever arch file, hoping I didn’t accidentally recycle the letter during the morning chaos.
I spend my days constantly chasing – chasing updates, chasing prescriptions, chasing information, chasing appointment dates that should be routine. It is exhausting.

In truth, I’ve feel like I’m lost in a funhouse of mirrors, wandering through reflections as I try to search for answers or sometimes just fighting to get the basic fundamentals of care. But every avenue I explore, I come up at against a dead end or a wrong turn and I see my own reflection staring back at me. A reminder that the answers, the expertise, and the burden have all come to rest on my shoulders. Over the years, the reflection has changed significantly. I’m starting to see someone who is tired, fed up, angry – someone I don’t recognise anymore.

Imagine we had a sledge hammer to smash through the mirrors. A future where the light beams through, taking away the confusion and effort to reveal one clear pathway through the maze that you feel trapped in. AI could be that sledge hammer. Where everything can be accessible in one place. A world where proactive reminders and intelligent data flow don’t just lighten my load, but transform the entire experience of care.

That’s the hope we’re reaching for, not just for me, but for every family that’s are trapped inside a system that wasn’t built for them.

We are standing at a crossroads where AI and data management could transform the entire landscape of healthcare, especially for families navigating rare and life limiting conditions. Time is not on our side and we are missing a golden opportunity. A future where AI accelerates diagnosis, ending the cycle of repeated tests and getting families answers faster. Where AI driven insights personalise care pathways in ways we’ve never seen before. Where predictive analytics help us understand which treatments hold the most promise, based on real world data and the natural history of rare conditions. And imagine a world where, instead of chasing the system, the system finally comes to us. Where proactive AI notifications ask, “When was the last time your son had his DEXA scan?” or flag when something is overdue. Where information flows, care connects, and families are supported rather than stretched.

Because in the end, every family deserves more than a maze of mirrors. They deserve a clear path, a steady light, and a system that walks beside them rather than behind them. This isn’t just innovation, it’s humanity. And it’s time.

Note: Header image imagined from the text by artist Chris Glynn