Last week, I participated in a terrific event out in the Bay Area, the DiabetesMine Innovation Summit. Amy Tenderich, the leading patient advocate, and her team organized a truly inspiring day of presentations and discussions.
This past weekend, I finished a 20 mile run. This marks the peak of my training for the Philadelphia Marathon! I’m glad that the distances will be tapering down between now and race day on Nov. 18.
The run itself went well. After a sluggish 19-miler two weeks before, I was glad to bounce back with more energy and a better pace. Most importantly, I am glad to have no injuries at this point in the training. I have gone into both my previous marathons injured, so staying healthy remains a key goal for me.
My blood sugar remained relatively under control for this run. With longer distances lately, I have noticed that often my blood sugar will be ok the first two hours of running. But my reduced basal rate, combined with drinking Gatorade along the way will cause it to spike in the third hour. This last run, I skipped the Gatorade and instead had a second gel instead. I use the Hammer Nutrition brand because they use more natural ingredients than other brands. At about 22g of carbs, once an hour works pretty well to both give me an energy boost but not knock my blood sugars too high (compared to 34g of carbs in a bottle of Gatorade). I also have been eating a banana about a half hour before starting a run. It’s tricky to get the timing right since you don’t want to get going with too much food in your stomach. Nonetheless, low blood sugars during a run causes me more anxiety than high blood sugars. General nervousness will probably be another factor on race day, causing blood sugars to spike. But I’ll be on the lookout for that this time.
I’m excited to be taking part in an Insulindependence event the night before the race in Philly. IN, as they refer to themselves, is great in connecting athletic patients with diabetes. The Philadelphia Marathon is one of their regional events, so hopefully I will get a chance to chat with several other T1Ds. IN excels because it is made up of so many dedicated, driven and proactive patients looking to stay healthy. Looking forward to it!
I have grown increasingly frustrated with the MapMyRun iPhone app. For the first half of this year, I used RunKeeper to track my exercise. I switched to MapMyRun on July 1. I wanted to give each app half a year and do a comparison later. But given how disappointing the results have been recently, I am switching back to RunKeeper.
The main problem I am having is such an oddly simple one. MapMyRun is often calculating inaccurate total times for my exercise. A few examples are below. Today, it notes a start time of 7:58 and a completion time of 8:40. Duration according to the app? 24 minutes. My previous run on Saturday has a start time of 7:10 and a completion time of 8:27. Duration according to the app? 32 minutes. Looking back through the results, I see this error creeping up again and again and again. My phone is on my arm during runs with the screen locked, so there is no way that the pause button is getting hit.
I see no point in continuing to use this app when I was perfectly happy with RunKeeper. Neither app is perfect, especially since so much of the functionality relies on the phone’s hardware and GPS connection strength. Regardless, I see no reason why MapMyRun cannot calculate a length of time between when I hit “Start” and “End.”
In other exercise-related self-tracking news, I have been having problems with my new Nike Fuelband. After the glowing review in my last post, things have gone sour with the device. It stopped working completely 2 weeks ago (only 3 weeks after I started using it). It simply stopped syncing with my computer. It kept insisting that I update the driver, but the driver update failed every time.
To their credit, Nike’s customer service was very responsive. They quickly replied to my e-mails. They then forwarded me on to phone support to get a replacement device, which showed up about a week later.
As a result of this change, I lost about 3 days of data and have a gap in my recorded data. I tried to syncing the new device to the official Nike mobile app over Bluetooth, but this failed just as it had for the first device. And today, I am even having problems signing in to Nikeplus.com. Clearly some technical issues to be worked out there with both the hardware and the software. But I’m willing to give them another chance. I still think the product is a good one (assuming these bugs get worked out soon).
Last week, I was able to get my hands on a Nike+ Fuelband to try out for a few weeks. I have to say, it is quite impressive. The hardware, the software, the whole experience is very well done.
It being July, we am glad to now be halfway through 2012 and halfway through gathering data for my Databetes 2012 thesis project. Since Jan. 1, I have been recording every type of data related to my diabetes. That includes blood sugar readings, insulin dosages, A1c readings, exercise, meals, drinks and more.
Data aggregation is still a tedious task for patients with diabetes. Device manufacturers still design proprietary systems that do not play nice with their competitors. In the end, patients suffer because they cannot get all their readings in one place. This makes it difficult to design improved analysis software to spot trends and offer proactive notifications.
Beyond the essential medical readings, I also believe that it would be helpful to have additional information to give medical data more real-life context. This would make it easier for patients to manage all this information, understand how they are doing and make more intelligent decisions.
Instead of getting held up by the current challenges with aggregation, I have decided to move past it and focus on other pieces to the puzzle. I am convinced that if patients had a complete set of data, they could improve their health. But few people have spent much time on what a future patient data system will look like or how it will work. That is the focus of this project. I do not expect others to adopt the same approach to aggregating their data because it is quite time-consuming. But I do believe a better solution will result in more patients becoming interested in making optimal use of their data to improve their health.
As we continue development of Databetes, we are using my medical data as the first test case for this new type of solution.
We are also studying existing products on the market, both in the diabetes sector and other data-intensive services.
We look forward to showing you our progress in the coming months!
This weekend, I got to spend time with two separate support groups for patients with diabetes. On Saturday, I attended my first “Dawn Phenomenon” session. This is a Saturday workout session run by Rachelle Glantz, a New York City team leader for Insulindependence.org. Insulindependence, or In as they call themselves, is a group for patients who make exercise a part of their treatment. The group has four separate sub-groups called A1Sea (for surfing, diving and kayaking), Glucomotive (for running and walking), Testing Limits (outdoor adventure) and Triabetes (triathlon). Rachelle is the head of the Triabetes group for this area.
I have been learning more about In over the last few weeks and plan on joining soon (a yearly membership requires a minimal fee). I am really impressed with them as a grass-roots organization that connects very driven patients with a healthy and supportive community. The people involved seem to be really impressive athletes, regardless of the fact that they have diabetes. Most importantly, they all seem to “own” their diabetes. They are tackling their condition head-on and refuse to have it affect their other goals in life.
On Sunday, I attended the New York Type 1 Diabetes Meetup group’s June event. This was my fifth time at a Meetup. We normally grab dinner together, although this time we met in Prospect Park for lunch. The group usually draws 5 to 15 patients. Many are like me and have had diabetes for 20 or 30 years. Others are newly diagnosed and still learning about the condition. The conversations are always interesting for a variety of reasons. First, it highlights how uniquely diabetes affects different people. While one patient may have a particular outcome in one situation, another patient may have a completely different outcome when encountering the exact same situation. For example, we recently talked about how drinking alcohol affects diabetes. For me, the large amount of carbs in beer and liquor do not affect me. My blood sugar level does not rise or fall in the hours during or after I drink. Yet another patient sees the opposite, with the carbs having the same effect on their body as sandwich. He takes a dose of insulin to compensate for the carbs while I don’t take any.
The best thing about the Meetup is that everyone is supportive of each other’s situation. Even this casual discussion of daily challenges does feel good. Having lived with diabetes for 26 years now, I do not feel isolated by it. My control is also very good right now. But still, I always learn something about diabetes and leave thinking about whether some of the treatment decisions other patients make might be right for me too. I strongly encourage other patients to take part in these types of activities regardless of your situation. There is always something valuable and unique about gaining knowledge from other patients rather than your doctor. I know I didn’t have this type of support when I was newly diagnosed and most needed it. It’s nice to think that other patients can benefit from the wisdom we have accumulated over the years.
Last weekend, I headed to Philly for the ADA’s 72nd Scientific Sessions. It was my first time attending an ADA event and I found it quite interesting. Throughout the day there were speeches on all the major topics, with researchers presenting their most recent findings. The exhibition hall was also filled with device manufacturers and pharmaceutical companies.
The most interesting session I attended was on closed loop systems, the combination of insulin pumps and continuous glucose monitors. It was my first chance to hear Edward Damiano, the Boston University biomedical engineer. He was one of several speakers researching a combination pump/CGM that delivers both insulin and glucagon. The thinking is that having both hormones available allows for greater control, with one lowering and one raising blood sugar levels. Other speakers noted the encouraging results from the Medtronic Paradigm Veo. It suspends insulin delivery if blood sugars go low and the patient does not respond to alarms. Together, all the research looks quite encouraging. At the same time, I highly doubt that this technology will be widely available for several years. Multiple presenters talked about how difficult it has become to get government clearance for the U.S. market, even after approval in multiple other world markets.
Strolling through the exhibition hall, I checked out several new insulin pumps and CGMs. I was certainly impressed with the Cellnovo pump. Produced by a British team, it is one of the most stylish and well designed systems I have seen. They have certainly studied the Apple design aesthetic. The device is a small patch pump with an accompanying touch screen handset. The handset has a glucose monitor conveniently built in. Most interestingly, their pump contains an internal accelerometer for sensing the activity level of the patient. The thinking is that the pump can warn a user if excessive activity levels are about to lead to low blood sugars. Cellnovo is still awaiting approval for their system in the U.S.
Tandem’s new T:Slim insulin pump also got a fair amount of attention. It bills itself as the first touch-screen pump on the market. The device is quite small and also has a carefully considered design. Yet when you look at the details, Tandem’s product fails to deliver as great a user experience as the Cellnovo. For example, the T:Slim gives a readout for insulin on board by noting the amount recently delivered and a countdown until the insulin has passed through the system. But since rapid-acting insulins have such a clear spike after their delivery, it would be more helpful to see this data displayed differently. The last 2-3 hours of activity are rather low and should only factor in minimally to patients’ decisions.
Nonetheless, I am excited to see more competition in the pump marketplace. Medtronic currently has 72% U.S. market share. The U.S. market also represents a similar 72% of global sales. More choices for patients will certainly inspire greater product innovation.
I also visited Dexcom’s booth, which also housed the team from SweetSpot (Dexcom acquired SweetSpot in February). I am often amazed by how accurate my Dexcom CGM is most of the time. On display was their next generation CGM. The transmitter remains about the same size but the receiver has gotten about 30-40% smaller. It closely resembles an older version of the iPod Nano. The transmission range will be greater as well. They are hoping to have it on the market within the year.
With every device manufacturer I visited, I asked them about data format standardization and accessibility. Each representative had no idea how to respond to my question. None seem particularly interested in building an API to allow patients greater access to their own data. Just like developments in the hardware design, I assume it will take one or more smaller manufacturers to disrupt the current system. I wholeheartedly believe the trends in patient-centric design will mean that patients will insist on having easy and complete control over their data. It is amazing to me that hardware manufacturers continue to produce these mediocre proprietary software. Let’s hope that a new system will emerge soon that gives patient full data portability, allowing for greater software innovation. This will give patients greater options for improved feedback loops, data analysis and notification systems. I am confident these changes will empower patients and lead to improved health outcomes.
As part of my grad school work at ITP, I recently completed a project called “Ready to Start” for my Collective Storytelling class. “Ready to Start” tells the stories of athlete’s first long-distance race, be it a marathon or a triathlon. It focuses on the motivating factor for people to take on this challenge, dedicating both the time and energy needed to train and complete it. In total we conducted nine interviews, three of whom are patients with diabetes (including myself). For a longer description of the project, please see my ITP blog post. Or just jump to interviews with my inspiring fellow type-1 patients Rachelle Glantz and Jen Davino.
I’ve recently completed my most recent data visualization called Insulin on Board. I looked at 100 days of blood sugar and insulin data to see whether a low-carb diet was effective in keeping my blood sugars in range. To see a PDF of the final version, click here: http://bit.ly/KRTCzP
To learn more about the project, I have another blog post here detailing how and why I made it @ http://bit.ly/Jca8tX
This project was included in the show at NYU’s ITP where I recently completed my first year of grad school. It was also featured on the Flowing Data blog @ http://bit.ly/KR2Tf2
Last week, there were two events focused on health and technology. I attended the demo day for the new healthcare start-up incubator Blueprint Health. Additionally, last Friday was the day that the semi-finalists for the Data Design Diabetes contest were announced. It’s exciting that there is so much activity in this sector. It’s also interesting how differently these two organizations are approaching the challenges in the US healthcare system.