Category Archives: Diabetes Technology

Repetition is not progress.

If you’ve been following updates from me on Facebook recently, you may know that I’m due for arthroscopic surgery on my left knee in about a week. I haven’t talked about it here because, really, who wants to read about me while I whine about how I’ve been in pain for six weeks?

But I do have a point in talking about it now, so please bear with me.

I had to visit an orthopedic surgeon for the first time once I realized the pain wasn’t going away. This orthopedist, the one who repaired The Great Spousal Unit’s ACL 18 years ago, and fixed her broken ankle five years ago, is also performing my surgery. Seeing him means filling out the requisite paperwork, and at their insistence, registering for their patient portal (it’s a fairly large practice). Aside from the paperwork, and creating a new user name and password that I’ll never remember, I lost about 15 minutes that I’ll never get back. But that’s not all.

After my first visit, I was sent to get an MRI on my swollen, painful knee. I haven’t had an MRI in decades, so this meant going to a new place, filling out more paperwork, and losing another 15 minutes. The radiology practice also insisted that I registered for their patient portal, which I declined this time (“Don’t you want your MRI images mailed to you?” / “No, I’m happy with the CD you gave me, thank you”). Two sets of medical history, drugs that I’m taking, and pump settings. But that’s not all.

My surgery will be performed at a surgical center near my orthopedist’s office. The orthopedic surgeon is part owner in the surgery center. Guess what? The surgery center needed me to submit medical history, a list of medications I’m taking, and my pump settings. And the only way to submit all this is through their patient portal. This fifteen minutes stuff is getting repetitive. Fifteen minutes is time to wait for your BG to come up when you’re low, not to document the same information for the third time in a week and a half.

When People With Diabetes think about interoperability, we often think about getting our CGM readings to display on our insulin pumps, or sharing our CGM data with our spouses while we’re at work. And that’s true… all of that, in my opinion, qualifies as important steps in interoperability.

But I also think of interoperability as having one source of data, in one place, for all to access. For instance: I have my medical information, my device data, my list of medications in one secure place, and I get to decide when I want to share it with a medical team. I give them access to it at my discretion, for the amount of time I decide.

So if I need to see an orthopedic surgeon, and they want to see all of this, I can choose to allow them access to my information, and they can get it with a simple click from their desktops. In an emergency, we’ll have to work out a way so someone can access my information instantly from the hospital.

Certainly, my orthopedist can say to me, “If you don’t allow us access to your medical data, we won’t treat you”. But I’ll know that 1) My medical information is in one place, always; 2) Access to my information could be gained by others at my discretion; 3) My information could be kept up to date and accurate by me, on an ongoing basis (who knows if I made a mistake on that first set of information I submitted, or the second, or the third?); 4) I could revoke access to the data when it’s no longer needed; and 5) The data is available, staff isn’t necessary to hand it out, file it, or access it when my appointment comes up.

I could add to the list all day.

Nearly everyone is on board these days with the idea of less burden on the patient, and what I’m talking about here, in theory, solves some of that. What I think healthcare professionals and insurance companies have forgotten about is the importance of less burden on healthcare professionals themselves, and how less burden on collecting the same data over and over (and not making them read handwritten forms) will gain them extra time to care for patients.

I’m going to keep talking about it, because it needs to be talked about. A central place for someone’s medical information may be just as impactful as interoperability between diabetes devices. I mean, seriously, after my knee gets worked on, they might have to work on my hands because they’re tired from writing and typing. This can and should happen. I hope someone is working on it.
 
 
 

Moonlighting.

Here is where I disclose, in a proper way, that I have entered into a short term (for now) agreement to write a few blog posts on diabetes and technology for a website called Healthy Beeps.
 
 
My first post is live there now, and rather than re-posting here, I’ve decided to give Healthy Beeps their money’s worth and make you click over there to get the details:
 
HealthyBeeps-Shaul
 
They’re just getting started over there, but as is always the case with these things, I’m thrilled that someone asked me to write something for them. Look for more in the coming months, and feel free to poke around their site and find whatever you can to help you in your daily walk toward a healthier, happier existence.
 
 
 

Confession time: CGMs.

So with all of this talk about travel and safety and doing the right thing, I’m still not a consistent continuous glucose monitor user. Here’s my confession:

I don’t want to be a CGM user.

I hope my endocrinologist isn’t looking at this today (she does look in every once in a while). But she’s already familiar with my resistance on the subject. Let me see if I can explain this. I’m sure all of the points I’ll make here can be shot down with common sense wisdom that just about anyone living with diabetes can understand. But there are a few reasons why I haven’t made CGM use habitual.

When I first started using an insulin pump five years ago, I also started wearing a CGM all the time. The CGM I was using was horrible; it had accuracy issues, and it was always painful to insert. It was so frustrating that after about nine months, I gave up on it. I won’t go into it anymore, but I think that was where my reluctance started.

Actually, the biggest, most overriding reason for not wanting to wear a CGM is that I do not want one more thing attached to me 24/7/365. That’s not to say that showing a CGM transmitter in public, at the pool or in the shower at the gym, would cause me embarrassment. Those days are long over. I couldn’t care less about that, and I certainly didn’t have a problem with it when wearing a CGM during clinical trials.

No, the problem of “one more thing” is bigger than that. It’s not only wearing something else all the time. It’s having to plan out site changes for two devices rather than one. It’s having to pack supplies for two devices rather than one. It’s fighting with insurance profiteers over coverage of two devices (and supplies for those devices) rather than one. It’s having to carry around a receiver in my already overcrowded pockets. It’s dealing with real estate issues earlier because I’m constantly violating my body in two places at a time instead of one.

I think there might also be, hidden somewhere deep, an aversion to gathering data for my endocrinologist to go through and find fault with me. My current endo is not like that at all, and I know she would never shame me if my numbers didn’t look so great. However, old wounds take time to heal. On the other hand, this would probably be the easiest place for me to give a little. In reality, I know this would not be an issue, so why should I continue to make it one? Patients are not always perfect either.

After going over my concerns with my endo, she suggested that instead of wearing a CGM full time, maybe I use one for ten days or two weeks in between appointments. That way, she could at least get a little data on how my BGs were trending throughout each day. This seems reasonable, and not too intrusive. But has that made me start the process over again? No. Old wounds take time to heal, and old habits die hard.

I’m not sure I’m solving anything here. But this is how I deal with issues like this: I talk about them, to myself, family, and friends, and in doing so, I often talk away some of the concerns (read: fears) of change. I know that CGM technology is better, and with the rollout of Nightscout and Dexcom Share, many people are able to add an additional layer of security in the advent of a hypo away from home. Why wouldn’t I want to make that a part of my care too?

I don’t think I’m there yet. But I’m getting closer. Secretly, I’ve even made lists of who I would share my data with… even “backups”.


 
 
 

Because… Progress.

January is practically over, and you know what? It’s been a pretty good start to 2015.

Tandem has announced approval of their larger-capacity insulin pump.
The t:flex pump may not raise a lot of eyebrows, but it does provide something no pump has provided before: The ability to pack 480 units of insulin in the reservoir. I can’t name anyone off the top of my head who needs this right now, but I have been in support group discussions where People With Diabetes felt they couldn’t use an insulin pump because their daily insulin needs are higher, and they would have to change a set out too often, and it just wasn’t worth it to them to go through that. For many, this will solve that problem.

Not to be outdone, Medtronic obtained approval (outside of the USA) for their new 640g system.

This is the first system available to the public that will both suspend insulin delivery when a patient reaches a low point on their CGM, and resume insulin delivery when a patient’s CGM reading recovers. It also comes with additional hardware that looks to me like a PDM, and a seriously-needed upgrade to the CareLink software that, in images on Med-T’s website, look an awful lot like what you see with Dexcom’s downloads.

Speaking of Dexcom… The FDA announced approval of the Dexcom app software that allows CGM users to share their data with others in real time.

For people with hypo unawareness, sharing CGM readings with people close to you is life-changing, and potentially live-saving. Dexcom’s system will employ a new Dexcom Share receiver (the previous version was the Dexcom Cradle), and existing users will be able to upgrade at little or no cost. Of course, you and anyone you connect with (via the Dexcom Follow app) will have to have an iPhone or an iPad device to make this happen. But yay for the FDA allowing Dexcom to go through the de novo classification process, a regulatory pathway for low to moderate risk medical devices that are novel and not substantially equivalent to any legally marketed device, rather than making them go through the gauntlet of the full medical-device approval pathway.

I know, I know… all of these devices may have issues and fall short of what we are looking for from innovations in the diabetes device space. But who was talking about real-time CGM monitoring a year ago? Who was talking about pumps that suspended, then resumed insulin delivery based on CGM readings? Who was discussing larger pump capacities? Okay, well, people were talking about those things a year ago, but at least some of us didn’t expect any of these innovations to be rolled out to actual customers within a year’s time.

In the end, we can’t complain entirely that we don’t get everything we want right now, because… Progress. Things are moving forward, and I’m hoping that we’ll eventually reach a tipping point where the urge to both innovate and get those innovations to patients as soon as possible will cause device and drug makers to move at a pace that matches the rest of the world’s technological advancements.

Because… Necessary.
 
 
 

What else do you want?

So GoogleX has announced their intent to develop, and find a manufacturing partner for, a glucose-sensing contact lens. Okay, great. Let’s hope their research comes up with something new and fantastic for People With Diabetes.

However, it’s not usually one device, but an entire system that matters, that helps us. In fact, I’d like it if GoogleX’s research results included several other ideas. You (and by You, I mean anyone developing new medical technology) can apply many of these notions to anything you might develop in the future. I’m including some other ideas here just because, you know, it’s my blog, and it’s Friday. Do you have ideas of your own? Feel free to get your own blog, or leave a comment below.

1. Accuracy, accuracy, accuracy. The data I’m getting from your device needs to accurately report what’s happening with my BGs, or it’s a non-starter with me. Period.

2. Can you make this technology work with the rest of my robot parts? Like, can it talk to my pump please? Regardless of the pump manufacturer? This also requires you to get on board, Asante, Medtronic, Tandem, Animas, et al. And FDA. Silos: Bad. Collaboration: Good. I believe the word we’re referencing here is “Interoperability”. See also “Open Platform”.

3. Ooh… Can we also have it upload data directly to our healthcare professionals? And can we force our healthcare professionals to actually read it and use it to help us get to meaningful outcomes? I’m not above using Pavlovian methods in pursuit of this goal. In fact, just thinking about this has me salivating like a dog.

4. Any chance you could get it to determine actual carb counts in literally everything? This is something else that would need to work in concert with another device. Look at a plate of food, blink your eye (or maybe wiggle your nose– whatever works), and have the carb count immediately display on your smart phone or Google Glass. You know, something like that might actually get me to invest in a smart phone.

5. While we’re at it, can you get any accompanying software associated with your product to work over multiple operating systems, including Windows, Apple, and all the rest? No excuses about how “we just wanted to get it to work on one system, and we’ll be working on the others soon”. Conformity: Bad. Diversity: Good.

6. While we’re still at it, can you make it affordable? Always? I mean, if you can help someone use their phone so they can see House of Cards or an adorable dog food commercial via their television set, and do it for 35 dollars, you should allow me to have access to my personal data without it costing me a fortune.

7. Can you get my insurance plan to cover it? This would eliminate the need for #6. Extra points for you if you can pull this off. Extra extra points if you can make it available to everyone who wants it. If we’re living with diabetes, we’re all equal, even if our insurance plans are not. No use getting excited over a new device if I can’t afford to get my hands on it. And I don’t need the guilt that comes with having access to something that someone else does not.

8. Can you use David Bowie’s Space Oddity in your marketing efforts for this product? No real reason, except I think it’s kind of a cool song with a great sound that lends itself to something futuristic. Even if it is nearly 45 years old. Side note: Maybe this isn’t the best choice here. Listening to it again, I realize it always reminds me of going low. That funky/weird guitar thing in the background is what’s playing in my mind during hypoglycemia. So, ummmm…. Never mind.

Those are my eight seven ideas. Feel free to add to the list by leaving the results of your brainstorming below. And please remember it’s Friday, so feel free to have fun with it too.