Photo by Roberto Nickson on Pexels
These days we’re all seeing a lot of graphs about the coronavirus. That’s because we have a genuine and desperate need to understand what’s going on, and graphs make sense out of piles of numbers. I know; for years I made a living understanding data, and often the best way to share this knowledge was to graph it. Graphs show trends, which is what we really need - they answer “What’s going on? What will happen next?” The more complicated an issue gets, the more important that is.
Did you know? More and more these days, empowered patients are taking information into their own hands and creating their own graphs. Sometimes they use paper, sometimes they use Excel, and some are even starting to create apps. In every case, the person with the problem - the patient - arranges the information to help get the picture they want - to focus on what’s important to them, to solve their problem.
This is exactly the idea of a dashboard in a car or a plane: a set of gauges that help you see at a glance what you need to know. Here are some examples from patients I’ve met in the past couple of years.
1: Kate and Kristina Sheridan
When Kristina Sheridan’s daughter Kate was in 8th grade she was a star athlete and star student, but she got a horrible case of Lyme Disease, immobilizing and disabling her. She became a complex patient with multiple conditions. Thirty doctors and fifteen diagnoses later, still without answers, the family typed reams of hospital data into a spreadsheet and added a log of twenty-six symptoms as they came and went. (Talk about complicated!) This helped get a more complete picture of Kate’s status.
From this they created their own dashboard, which ultimately helped with the girl’s recovery. She’s not only completed high school; in 2019 she graduated from Oxford with a master’s degree.
1: The pile of raw numbers 2. Organized into XLS 3. Their own dashboard
2. Michael Morris
Stage 4 cancer patient Mike Morris was getting care at four different hospitals. They all used the same brand of computer system (Epic) but they couldn’t see each other’s data - so none of his four oncology teams had a complete picture of his treatments and test results. That’s a problem: how can they possibly achieve to their top potential if they can’t see what’s going on?
Being a programmer, Mike created a software tool called CureSoft that let him pull together all his data from all four hospitals. From that, he created a dashboard combining the things that mattered to his doctors and to himself. (See illustration.)
How transformational is this? Consider that from then on, every doctor visit started with the patient presenting the situation to the doctors - the opposite of the usual. It’s a glimpse of the world we’ll see in the future, when health data is fully portable - but this patient created it in 2018, because he didn’t want to wait.
3: John Keyes
John Keyes is a blood disease patient outside Boston who needs to keep track of lots of numbers, to better manage his condition. He’s seen plenty of apps that keep track of useful things like weight, body temperature and so on - but nothing that tracks what he needs.
So he created an app called BloodNumbers that lets him see what’s important to him, in views that are important to him.
John’s app won first prize in the Patient Innovator Track at the FHIR Developer Days conference in Amsterdam last fall. (Yes, a competition for patients innovating in health data software.) He’s using the prize money to see if he can make it more general, so different people can make their own dashboards. He’ll be updating his BloodNumbers app and website as time goes by … he never intended for it to be a public thing, because access to data let him do it just for himself. How’s that for a transformed world?
Knowledge is power. Understanding is real power.
We are on the verge of a new era, and I don’t think I’m exaggerating when I say that: I’ve watched the evolution of data access and computing power for decades, and there’s a really exciting convergence underway. In the same way that online appointment scheduling and automated reminders make it easier for people to do what they want, when they want, this new era of managing our own health data will be just as transformational as when online banking arrived.
Back then it was hard to imagine we had to go to the bank to do anything; today it’s hard to remember when that was true. Now comes the era, the start of the era, when you’ll be able to see the health information you care about, in a dashboard of your choice. Just like online banking, it will take some time to mature. But someday that future dashboard may change - or save - a life you care about. Stay tuned.