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.
 
 
 

All about the support.

As you probably know by now, I really like to support my fellow Friends With Diabetes. That’s especially true when someone is bravely starting something new, and looking to make their mark.

Enter Pumpstash.

Actually, let me first tell you about Corinne Logan. Corinne has been living with Type 1 Diabetes for 18 years. She’s been wearing an insulin pump for 14 of those years. Right now, she’s a sophomore at Fordham University in New York.

Her biggest problem in the last few years has been what to do with her pump. Especially when she’s competing and exercising (Corinne played lacrosse and soccer in high school), wearing spandex shorts and trying to figure out where to stash her pump has been a tall order.

Her mom came up with the idea of creating pockets in the shorts, so there would be a place to put pumps or CGM receivers. That’s what gave Corinne the idea to start Pumpstash. The idea is so simple, yet so necessary: Create something that has built-in pockets to help you store your pump and other necessary items.
Pumpstash1

Pumpstash2

Corinne is starting to get the ball rolling on her project. In fact, she’s in the middle of a Kickstarter campaign that has a little over two weeks left. Check the video, and you’ll see what it’s all about. Here’s the deal: Corinne needs $5,000 to get this thing off the ground (she’s already raised over 3,000 dollars). Once she’s secured the five thousand, she can go into production on the shorts and start offering them to customers.

The best part is, once she starts selling them, she’ll be donating 10 percent of all her proceeds to JDRF.

So… you get to help a student with an idea get that idea off the ground. And once it does, JDRF, and by extension, all of us, get to benefit too.

Hey, this is not that elusive cure we’ve been waiting for. But I am so inspired by people who aren’t just sitting around doing nothing. Here’s someone with diabetes, with a worthy idea that’s worth our support. So go visit Corinne’s Kickstarter page and help someone with their dream. And…

Good luck Corinne!
 
 
 

Summer is the time for Champion Athletes With Diabetes.

Hello Athlete… Competitor… Iron Person… Runner… Biker… Swimmer… Game-Changer… and also, Person With Diabetes.

It has not slipped past me that we are entering the height of activity season in North America and Europe. Many of you are out there working hard every day to get ready for a big event: A 5k run, a long ride, a triathlon, or something else you’ve been wanting to participate in since there was frost on the ground.

Maybe the most inspirational athlete you know is the one close to you who is living with diabetes, and their story is worth celebration and reward.

That’s where this medal comes in:
Champion-Athletes-With-Diabetes-Medal
We’ve given away 27 of these babies to Champion Athletes With Diabetes who reach their athletic goals while dragging along diabetes at the same time. D-Athletes are special, from Ryan Reed, winner of the XFinity series NASCAR race at Daytona this year, to Bob Parant, who made it 65 miles after losing part of his leg, to Janie in Ohio, who completed her first 5k last year after more than 40 years with Type 1.

And trust me when I say, all of our Champion Athletes With Diabetes have stories that are just as inspirational.

Are you next? Is your loved one or family member next? Don’t forget about us when you or that special one reaches the finish line. There are four things that will get you the medal:
 
 
1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said. I’m also semi-flexible on the dates. In other words, don’t stress over this part.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

I think D-Athletes are amazing. If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life.
Click here to find out more.
 
 
 

The DOC as an information source.

It’s easy for me to think of the Diabetes Online Community as this lovely group of people who advocate, support one another, and help others live better lives with diabetes.

What I sometimes forget, but can never underestimate, is the power of the DOC to inform and educate. Let me give you an example:

After working for my company for 15 or 16 years, I still hadn’t met one other person there living with diabetes. Now, after almost 17 and a half years, I know four.

One of those people contacted me last week to ask about the Animas Vibe system, the pump integrated with the Dexcom G4 continuous glucose monitor. They asked me if I had tried it, and if so, what I thought of the product.

I said that I had not, but had used an Animas Ping pump during a couple of clinical trials at the University of Virginia. This person was really looking to get first-hand knowledge of how the Vibe works and whether it was worth the hype. I then digressed into how awful it is that no insulin pump maker will let patients trial pumps anymore (lamenting the demise of the Snap), and how this would all be easier if we could just decide for ourselves, instead of deciding based on what a company rep or a doctor tells us. Digression is my strong suit.

But you know what? I knew that many people have used the Vibe system, and they’ve written about it, and it wouldn’t take too long at all to find a thorough piece on the subject.

In no time, I found this insightful review of the Animas Vibe by Melissa Lee at A Sweet Life. Sure, I knew that Melissa is knowledgeable and trustworthy, but even if I didn’t know that, her review was a very good one, and I think it’s just what this person needed.

I don’t know if this will help my friend decide on whether the Vibe is the right choice for them. What I do know is that I am often guilty of thinking about how I connect to the DOC, rather than how the DOC connects with me.

This is a good reminder of the vast treasure trove of information that we are all contributing to our community. People don’t have to always go blindly about the healthcare universe, not knowing about a product they and their insurance provider are purchasing until after they purchase it. Just knowing this information is out there already helps people make informed choices, rather than guesses.

Your story, your experiences matter. Sharing the stories of others and their experiences matter just as much. That’s been true since the earliest civilizations graced our planet so many years ago.

So today, let’s remember the power of the Diabetes Online Community as an information source. And let’s keep adding to the wealth of knowledge.
 
 
 

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