Today we bring you the final interview with one of our 2013 DiabetesMine Patient Voices Scholarship Contest winners, wrapping up this 10-week series in which we've featured each awesome empowered PWD chosen to attend our DiabetesMine Innovation Summit coming up Nov. 15.
Meet Simon Carter, a 40-year-old "tech guy" in Melbourne, Australia, who not only lives with type 1 himself but has a 9-year-old daughter who is also diabetic. With a background in IT and software development, Simon's applied his experience to the diabetes data world to create a program he calls ManageBGL — software that monitors, charts, and even predicts blood sugar trends. On the personal side of diabetes management, he and his daughter both use insulin pens rather than pumps.
Here's what Simon has to say about all that:
DM) As always, let's begin with the diagnosis story... in this case, yours and your daughter's.
SC) I was diagnosed when I was 16, fairly quickly as my younger brother had been diagnosed about four years earlier, so we knew the symptoms. We did a lot of camping, and on the long drives to and from we kept stopping every 100km (80 miles) for him to pee! For my own diagnosis, the signs were similar, I remember feeling sick and missing school, being given flat lemonade to drink (apparently better than fizzy?) which made me feel much better immediately. Looking back, this doesn't make any sense. When I did get to school, I knew where every single toilet in the school was, including the staff ones we weren't meant to use. Just before diagnosis, a trusted family friend told me incorrectly that there were other reasons I might have high blood sugar, so I had a very long period of denial. But when I finally accepted it, I maintained good control. I was determined not to let diabetes get in my way. I rejected my first endocrinologist as his advice left me in a coma for three nights of a six-night bushwalk. I became much more proactive, and far more questioning after that.
As for my daughter Lucy, we suspected she was diabetic because she had super-sodden diapers in the morning. So we got some visual (i.e. color-change) strips, cut the diaper open and put a strip in and squished it in the gel. We also compared this to a normal diaper filled with water — to ensure the gel didn't give us a false positive. We were admitted straight to hospital from there — our first daughter's excellent pediatrician had turned pediatric endocrinologist, so we made sure we saw him.
It's not bad really — my meter has 'Dad' written on it, and we use different lancet devices (because she lost mine!). We both use half-unit pens, and they're labelled with S and L. For Lantus we have our doses written next to the dose window, so as doses vary up and down it's easier to keep track. I also carry my kit in a small bag so they're hard to mistake. With ManageBGL, we have our photos in the system so it's always easy to tell who we're calculating doses for.
How did the idea of Manage BGL come about?
My background is 13 years running my own international software development company, in the data conversion, data integration and analysis space. I've also built data warehouses for the pharma industry, and run several very large websites. Having long-term T1, I was the ideal candidate to invent this system.
ManageBGL grew out of a several needs we had with Lucy at school:
- To ensure that one particular school nurse was doing what she was meant to. The other two nurses are fantastic, but this one was a dud and needed everything spelled out -- the kind of person who puts a band-aid on a bruise, or calls parents when children have a temperature of 37.5 deg C — which is perfect).
- To ensure that one sports teacher was doing what she was meant to. This teacher should have retired long ago, and used every excuse under the sun to avoid doing blood tests.
- To get around the fact that the paper-based log-book was often not filled in correctly, and it was impossible to decipher and to reconstruct Lucy's day in order to improve for the following day.
- To make a system that was very easy for anyone to use, with self-explanatory instructions. Unlike a log book, ManageBGL can take active insulin into account, and give better instructions.
As I developed the logging and live sharing side, I decided that blood tests as isolated points were simply not enough. So I added a bolus calculator with tracking of insulin on board, and at this time switched myself and Lucy to half-unit pens to take advantage of the greater dose accuracy. Both her and my A1C dropped a full 1%.
I also wanted to have live charts with some ballpark idea of where her BGL was going. Joining the dots or trying to curve fit was clearly wrong, as were the existing control-theory approaches I found in my research. With my 12 months on the pump, I figured that it couldn't be that hard to figure out. If we knew the BGLs, insulin doses and carb counts, then surely we could predict what was going to happen? It turns out you can! ... if you do it right.
We wrote about ManageBGL as a "virtual CGM" last winter. But can you remind us how the program predicts BG levels?
From a user point of view, after setup you input the same information into ManageBGL you would into an insulin pump — blood sugars, carbs, and either enter the insulin dose manually or let the software calculate that. ManageBGL then combines this with big data, and the pharmacokinetic properties of multiple insulin types (what the body does with them) and also the pharmacokinetic properties of food intake to make predictions. The more information you give it — exercise, stress, menstruation etc. — the more accurate it will be.
Naturally with diabetes there are many factors and often other hormones at play. As with meters, there is a margin of error. We should never expect an exact prediction. What we offer is confidence in where the blood sugar is going and how long it will take to get there. This helps with things like how long someone is safe to drive without testing, and for parents of T1 kids, reassurance that their kids will actually wake up in the morning. For people with fear of hypoglycemia or hypoglycemic unawareness, it is an essential tool. For endocrinologists, for the first time it shows high blood sugars that are expected — in line with the food eaten and the patient's parameters — and helps them avoid making incorrect dosing adjustments that can lead to hypos.
How accurate have you found the system to be?
In practice, we have found that ManageBGL's predictions are well inside meter error ranges. From these predictions, we can then use live coaching to correct dosing and carb counting errors. In fact, ManageBGL's first prediction was that I would have a hypo while out shopping at Ikea. I ignored the warning. But within 5 minutes of the actual prediction, I was in Ikea's maze-like market hall, trying to find some sugar whilst in a daze. I have also called my daughter's school to whip her out of the pool, because at work I could see a severe hypo was predicted. She was 1.7 mmol (30 mg/dL) when they pulled her out. The school now uses the system.
We offer a 14-day free trial, and nominal pricing which compares very favorably with the cost of an insulin pump, and a feature set that greatly exceeds that of legacy systems like Diasend.
ManageBGL is available as a stand-alone Android app at the moment and an iPhone version is in the works. The app is in the Google Play store and available once you set up a free account, the app allows you to input data such as insulin sensitivity and carb counts to get a glimpse of what you might need to dose, along with charts and logs of your BG data.
You can also subscribe to the more-inclusive service for six months through a few different type 1 and 2-focused packages, ranging from $6 to $15 per month (available in six-month bundles). We also offer a hospital ICU package to help healthcare professional manage PWD inpatients at Intensive Care Wards and Nursing/Aged-Care/Retirement homes that costs $890 for six months (or $150 per month). These "Advanced" packages include coaching, BG prediction and live sharing along with other benefits based on each subscription level.
How long does it take for a user to notice a real difference in their diabetes?
I feel that three months is the absolute minimum to demonstrate an improvement in A1C, and six months to demonstrate that it is sustainable.
It definitely sounds useful. Where does ManageBGL as a business stand now, and where do you see it going in the future?
We've been live for over 13 months, with over 1,000 users worldwide. We're doing translations, seeking grant funding for iPhone/iPad/Android versions, and looking for partners or investors to support clinical trials and FDA clearance. We want to license this tech to big pharma, who know very little about UX Design and Software Lifecycle processes. They are too slow to market, too clunky, etc.
What inspired you to enter our Patient Voices Contest?
I want other people to have better control like Lucy and I, without the insane price tag. Better control does not require an $8,000 insulin pump — after all, it's the same insulin. Unless you have a medical need (like overnight hypos that can't be controlled by reducing insulin, gastroparesis etc.), you can easily drop your A1C by 1%.
I also wanted to share the other benefits we have had as parents:
- Giving parents confidence that their child will wake up in the morning.
- Helping parents manage their diabetic kids at school by ensuring that the school follows the action plan, and allowing problems to be identified and fixed way sooner than normal.
- Helping teenagers who drop out of managed care — giving them a reward system and a baseline of care, way better than no care.
Describe what you hoped to communicate in your video entry?
I want people to know that they don't have to use an insulin pump to get the best care. And that there are far better systems available that already have what people have been dreaming about, and more!
OK, Twitter time: Tell us your sentiments on diabetes tools & technology in 140 characters or less?
Diabetes tools need to be open & patient-centric, providing insight without legalese, enable live sharing, prediction, rewards and coaching.
What are you looking forward to at the DiabetesMine Innovation Summit?
Being based in Australia makes it hard to meet decision-makers. I am hoping to open the eyes of the insulin pump companies to what is possible, and potential obtain investment / partnership proposals with them. At the same time, I hope to educate other diabetics not to be misled by big pharma about the role of insulin pumps. Greater control is far easier and cheaper — with half-unit pens, delayed eating when high, prediction of hypos, and other tech-driven adjustments.
How can this kind of advocacy potentially affect all of our lives with diabetes?
Reducing costs, reducing management overhead, and enabling data freedom means we can achieve greater insight, better control and achieve a safer future for ourselves and our children.
We're looking forward to hearing more insights at the Summit, Simon. Thanks for doing what you do, for both you and your daughter as well as the rest of the D-Community around the world!