Sweeter services for diabetics
On Daffodil day in 1999, at 7 years of age, I was diagnosed with Type 1 diabetes. Since then, I’ve witnessed a lot of change in the technology used to manage this life-long illness. We’ve moved from horror-film-worthy syringes to elegant ‘pens’ and micro-managing pumps. We’ve gone from clunky meters to smart-meters that can talk to your computer and make sense of blood-sugar level data. Technology’s done a lot to improve the life of a diabetic, but these technological advancements aren’t yet reflected by health-care services in the way they’re delivered.
Now, I’m no expert on the science behind diabetes, and am a fair few years away from being an expert in service design. However, I am an expert in being a patient. I have 16 years experience at medical centres and hospitals across New Zealand, I’ve worked with countless doctors and nurses, and have refined my skills to manage my diabetes to suit my lifestyle. Through my own experiences it’s clear that there are still a lot of gaps in the medical system that need to be addressed — and with a looming diabetes epidemic, change can’t come fast enough.
Human-box-ticking
At a recent retinal screening at the hospital, I was administered eye-drops which expand your pupils so that they can take photos of the backs of your eyes. Soon after the nurse had put the drops in, my eyes stung like hell. In a panic, I told her that something was wrong. To my surprise and frustration, she calmly replied “Oh no, that’s normal. Sorry, I forgot to warn you.” The nurse then lead me to a hallway and gave me pamphlets to read on retinal screening, by which time, my pupils were so dilated that the whole world was just a bright, fuzzy mess. Not exactly the best time for some light reading. To top it all off, I was given no indication of when the doctor would see me, and ended up waiting partially blind, in a cold hallway, for 45 minutes. This is just one of many times that I’ve been mistaken for just another box to tick off for the day.
At some of my three-monthly check-ups over the past 16 years, this lack of empathy has manifested in more subtle ways; through an excessive use of jargon, and the application of ‘best practice’, instead of what’s best for me.
In the interest of time efficiency, I usually let medical jargon skim over my head. You’re going to test for lipids in my next blood test? Be my guest. My fundoscopy was good? Great stuff. But at my last visit, while going through her list of questions to tick off, the nurse asked me about my ‘sexual function’. I literally burst out laughing. I understood that she meant ‘sexual health’, but I later reflected on how much information is asked of me, or presented to me in a way that doesn’t seem human. Jargon restricts my engagement with the nurse; I am a subject that she monitors, instead of part of the team working together to keep me healthy.
This approach highlights the key difference of knowing about diabetes and actually living with diabetes. Too often, I’m told about the ‘latest research’ and changes to ‘best-practice’ and the resulting, often impractical, changes I should make to my behaviour. I feel that some diabetic specialists fail to see that my illness is not my life. It’s just one of the hundreds of tasks I do and manage in a day, and although I’m proud to say that my control is very good, aiming for 100% perfection at the expense of getting on with life is both unrealistic, and unfair.
There’s some great examples out there of how empathy and design have been used to improve health services. IDEO’s 2010 re-design of A&E decreased violence by improving how ‘wait time’ information was shown, reducing patient anxiety and frustration. Doug Dietz transformed the terrifying MIR scan experience for children and their families by turning it into an adventure-themed visit. And Stephen Klasko, proposes that in the future when health data is so accessible, we’ll select medical students based on their creative and emotional intelligence, rather than their ability to retain information. These ideas and case studies showcase a positive shift towards more empathetic health services where the patient experience is prioritised to increase wellbeing.
Paper gaps and digital barriers
After moving to a new medical centre, I was asked to get yet another blood test. Being sure that I’d had one in the last year at the hospital, I called up but was told that those records might have been lost in the mail. This paper-caused gap in communication between health providers means that I have to go through the stressful, time and money wasting experience of getting a repeat blood test.
Even when services do move to digital, a vital opportunity is often missed; giving patients easy access to their own medical information so they are empowered to make informed decisions. Instead, this information remains locked up in the database, visible to medical staff, but kept at arm’s length from the patient.
I was impressed to find that the Island Bay Medical centre has a website called ‘Manage My Health’ which gives patients full access to their medical notes and data, visually tracking their well-being over time. Patients can even make appointments, request repeat prescriptions, and send messages to their nurse or doctor online. Like internet-banking, this is a game-changer; saving time, money, and enabling patient independence. I hope this approach continues to be adopted and built on across the country.
Invisible communities
Because diabetes isn’t a visible illness, it’s rare that you knowingly meet another diabetic. Although friends and family are a vital source of support, it’s been eight years since I’ve spoken to someone who truly ‘gets it’. With the number of diabetics expected to reach 438 million by the year 2030, there is a huge opportunity for medical services to facilitate peer-mentoring and link patients to diabetic communities. When we are connected to share experiences and practical ideas, the diabetic rollercoaster seems much less daunting.
Better services for a healthier New Zealand
It’s exciting how technology is enabling a shift toward more convenient healthcare. But with the prolific diabetic population on it’s way to costing New Zealand more than $1 billion a year, the services designed around these tech solutions need to change. They need to be more empathetic; look past the patient and see the person who wants to get the most of out of their life. Services need to go beyond digital; information needs to be easily accessible, understandable, and useful. Finally, these services need to be the link in a living eco-system of community support. If services work hand-in-hand as the human counterpart to high-tech healthcare products, we’ll no doubt see an increase in patient independence and wellbeing.
