Closed organisations and my mum’s cancer
by Adam Walther
The tears were welling up in her eyes. Her cheeks were bright red. She was rocking back and forth on the spot — standing, but rocking with nervous energy, first looking to me, then my dad.
“Why won’t they tell me? What are they hiding? It’s been over three weeks and they still won’t tell me.”
My mum was waiting for results of a bone scan to tell her if she had secondary breast cancer.
Over the past two years I had comforted, supported, and made sure we’d laughed through my mum’s battle with cancer, through the highs and lows. But this time I was pretty annoyed.
Not because of the level of medical treatment or care, nor the quality of advice or guidance — things which can be really tough to get right — but because the hospital wasn’t being open.
Communication from health professionals ranged from a supportive consultant (“I’ve marked this down as urgent”), to a dismissive phone handler (“I don’t know when you’ll get the results, it can be a while”), and back to a consultant who was suddenly unavailable again — and via emails, unanswered phone calls, and hospital visits.
This was absurd. How much time was being wasted by both my parents and the hospital in dealing with this one query? Why so many channels, so many people, so little coordination?
The issue wasn’t poor staff. It was poor structures and systems.
And that means the solution isn’t “hire better staff”. It’s “design better organisations”.
I’m not just a frustrated son navigating a broken healthcare system. I’m also a frustrated organisation designer navigating the same broken systems across local government. And having spent two years with a sick mum and eight years in the public sector, two observations keep coming up over and over again: organisations are good at creating unnecessary demand, and bad at distributing decision making. This leads to wasted time, wasted resources, and unhappy people both inside the organisation and out.
Reduce unnecessary demand through transparency and digital
Public sector orgs talk a lot about reducing demand. Yet ironically, a lot of demand is self-made through a lack of transparency. Closed systems lead to more confusion and anxiety in users and thus more reassurance required from staff.
Questions like “Am I eligible for social housing?” or “Where is my mammogram scan result?” are predictable. They come up over and over again, and they always will. Of course, answers aren’t always easy. Some will need to be personalised. But digital can manage this — or at the least, organise and mitigate as much of the demand as possible.
The private sector is already doing this. Parcel delivery services manage demand without having a single human involved: companies like DPD and Amazon know that if you transparently track packages from the moment they leave a warehouse to the moment they land on a doorstep, you can cut down on people calling for updates and asking when their packages will arrive.
Domino’s Pizza is also excellent at reducing demand through transparency. As Morgane Santos said in her excellent piece on Domino’s UX:
“This bad boy shows up after you’ve finished your order and you are, understandably, anxious about when it’s arriving. Because that is the #1 concern people have when ordering shitty pizza: when the hell is it getting here?”
Reduce process by distributing decision making
Opening data and pushing to digital is only half the solution. Empowering staff to take action is just as important.
Remember my mum’s consultants and phone handlers? None of them were able to help her — not because they didn’t want to, but because they couldn’t. My mum got fobbed off and then upset because bad processes meant staff literally could not give her assistance.
The best way to handle demand that can’t be managed by digital is to make sure everyone at an organisation is as skilled up and joined up as possible. Want to know how to prepare for a negative scan result? Have the receptionist trained and tooled to answer. Feeling anxious about paying for care? Make sure the social worker on call knows a colleague of hers who can provide info, advice, and guidance, and an arm around the shoulder too.
And once that’s done, the next step is to empower users. People are willing to do some work for you on their own — especially if it’s in their interests. My mum would’ve been happy to book a consultation online. Instead, she had to phone up the hospital and talk to the one person with access to the consultants’ calendars.
Making changes like these and rebalancing power and control have a huge impact on user experience — and on organisational budgets, too. As we all look for savings, both across councils and the NHS, there’s never been a better time to act.
So how did this chapter of my mum’s story end? Several patients ended up complaining at her hospital, all for the same reasons: they felt anxious, disconnected, uninformed, and angry.
The hospital realised the pain they were causing, but unfortunately, they went for a quick fix. Instead of addressing their issues around closedness and control, they gave everyone a hotline to call for cancer-related queries.
Two weeks later my mum called this number to get an update.
No one picked up the phone.
FutureGov helps build tech and organisations that make people’s lives easier. If you’d like to learn more, drop us a line at hello@wearefuturegov.com.
This post is part of a five-part series on designing digital organisations.
