Diabetes By The Numbers: Tidepool’s Big Data Donation Project.

Truth be told, I look to Christopher Snider as the gold standard for quality diabetes interviews and podcasts. I’ve wanted him on this podcast for some time.

Now, with that out of the way, let me tell you why Christopher was part of the podcast this week. He has a new role, as Community Manager at Tidepool.

Tidepool is a terrific nonprofit organization that helps provide a free, open platform where people with diabetes, doctors, researchers, and others can either upload or view diabetes data. Christopher explains it way better than I do, so I will encourage you to listen for that.

We spend a good amount of time talking about Tidepool’s recently announced Big Data Donation Project. Tidepool has agreed to donate ten percent of any fees they receive for selling your de-identified data to researchers. The money will go to one of eight diabetes nonprofits that you probably know well. Christopher explains it way better than I do, so I will encourage you to listen for that too.

There’s also a vague reference to Odin, the Norse god.

DBTN

Reference Material – Click below for more information on this topic

Christopher Snider is Community Manager at Tidepool:
Tidepool.org

To find out more about Tidepool’s Big Data Donation Project, go to:
Tidepool.org/BigData

Christopher Snider is host of two amazing podcasts:
Just Talking Podcast
Mark All That Apply

Review: The Accu-Chek Guide.

Full disclosure: I was sent a new Accu-Chek Guide by Roche so I could try it out. I was not asked to write about it. All opinions, good and bad, are my own. Read on for my thoughts.

I’ll be honest… I’ve been a fan of the Accu-Chek glucose meters going back to the Accu-Chek Nano (which I still have two of and still use), and I’m about to tell you why. In fact, there are three reasons why I’ve liked these meters for years.

1. Accuracy. Since my first Accu-Chek Nano, the readings I’ve received have been something I could rely on. Even after beginning on my Dexcom continuous glucose monitor, I’ve noticed that my results are almost always within 10 mg/dL of my Dexcom readings. Actually, they’ve been nearly always within 5 mg/dL of my Dexcom readings. Hard to get more accurate than that.

2. Consistency. Those accurate readings have remained, no matter how long I’ve used a meter. It’s really great when you have a feeling that your meter will give you result that you can count on, even if it’s high or low.

3. Improvement. Even though my Nano was pretty good four years ago, my Aviva Connect meter, which I received just about a year ago, has been great too. It’s also been something that’s been able to be synced with mySugr and Tidepool accounts, and believe it or not, there aren’t a lot of meters that are doing that, or doing it with Bluetooth technology.

While I can’t say I know a lot about the company, I can say that I’ve been happy with what they’ve produced for a number of years. So… how does this new Accu-Chek Guide measure up? Here are the pros and cons… since I like happy endings, I’ll give you the cons first.

Cons: Actually, the only con I can think of (feel free to add your own in the Comments section, if you have one) is the marketing of the new container for strips. It’s true that when you open a brand new container, the strips are neatly lined up and easy to access, and they don’t spill if you turn the container upside down. Once you’re about halfway through though, it’s easier to knock one or two (or a few) out of place and then they’re much more likely to fall out when you don’t want them to. Still, it’s not like the previous containers were that great. They went for an improvement, and I think it is an improvement, just not as good an improvement as they’re touting.

Pros: See my notes above about accuracy, consistency, and improvement. In addition, probably the biggest thing that makes me a fan of this meter are the strips themselves. The strips have a flat surface, meaning that instead of having to get blood on a narrow part of the strip to get a proper reading, you can actually get the blood on any part of the strip to get a proper reading.

Check this out (video courtesy of me):

When I saw that for the first time, I was hooked.

Now, let’s talk about price. Not the meter price, because you know glucose meter makers will make their meters extremely inexpensive in order to get you to buy the strips, which is where the real money is made. Roche, makers of the Accu-Chek Guide, is doing something different when it comes to pricing on strips. For people who have trouble affording the expense of strips, they’re implementing something called the Simple Pay Savings Program.

Here’s how it works:
You can get a savings card from your doctor, or from Roche. With the savings card, the first vial of strips would cost $19.99. Each additional vial after that, for the same prescription, is an additional $10.00. That means that two vials (100 strips) would cost $29.99, three would cost $39.99, and so on. You can use the savings care to get up to 12 vials, or 600 strips, per prescription.

All in all, I find this meter another compelling offering from a maker I trust. You might have noticed that I’ve almost entirely stopped reviewing products here, mostly because I get more offers to review things than I have time to write, and also because I want to only endorse things I truly believe in. Take this with a grain of salt if you must, but I really like the Guide.

Please remember that other than the meter and 50 strips, I’m not getting anything for this review. If you have a different experience with the Accu-Chek Guide or other meters from Roche, let me know in the comments below. As always, your experience may be different, which is just one of the reasons why we should communicate with one another.

I should also mention that Diabetes Mine did a fabulous and more detailed review of this meter last week. CLICK HERE to check it out.

Finding diabetes devices you can rely on is a tall order sometimes. Personally, I’m glad to have another meter I can count on.

FDA Workshop: Engaging with FDA in the drug approval process.

Between Diabetes Blog Week and being away on vacation for the past week, I never got a chance to tell this story.

On May 12, I took the day off of work to attend a public workshop at the FDA’s sprawling White Oak headquarters in Silver Spring, Maryland. This gathering was not specifically diabetes related, but I learned a lot anyway. Officially, the workshop was called:

Roadmap for Engaging with FDA’s Center for Drug Evaluation and Research

At this workshop, I was reminded once again that FDA officials speak using an alphabet soup of acronyms: CDER (Center for Drug Evaluation and Research), PASE (Professional Affairs and Stakeholder Engagement), DDM (Division of Dockets and Management), DDT/COA (Drug Development Tools Clinical Outcome Assessments), OHCA (Office of Health and Constituent Affairs), OSP (Office of Strategic Programs). Fortunately, the presenters, though heavy on acronyms, didn’t rely on them to convey their messages.

And the messages were significant, with a huge amount of information provided on what to know and how to engage with FDA regarding drug approvals. Want to know about diabetes drug approvals that did or did not happen? There’s a way to do that. Want to hold a meeting to bring patients together and invite the FDA to take part? There’s a way to do that. Want to stay informed on the latest news? That’s right… there’s a way to do that.



So, what was covered? A number of subjects, including the entire drug approval process, from start to finish. We learned how to “Rock the Docket” and use the Division of Dockets Management to research what’s happening in drug approvals that might affect People With Diabetes. There was an entire presentation on the various ways that FDA, and CDER in general, interact via social media.

And there were several interactive moments between FDA and attendees themselves, including question and answer sessions after presentations, and a chance to answer questions about presentations just concluded. Questions like “After this presentation, I am A) Not very confident about explaining the drug approval process, B) Somewhat confident about explaining the drug approval process, or C) Very confident about explaining the drug approval process”.
We recorded our answers using devices like these:

After lunch, there was a round of FDA Jeopardy. My team finished second out of four, but unfortunately, no prize money was awarded.

There were also a couple of presentations from representatives of patient communities who have had success interacting with FDA on drug approvals for medications that have helped the patients they represent.

I have to say that at the end of the day, I felt like the Center for Drug Evaluation and Research has a good handle on what they do, how important their mission is to people living with chronic conditions, and a valid social media strategy that keeps patients informed.

I was grateful to attend this workshop, and I walked away with a few new contacts from other patient organizations too. Not a bad way to spend my day off.

**To look at meeting presentation decks and order a transcription of the meeting, CLICK HERE.

Diabetes Blog Week: More than Diabetes.


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

We’ve reached the end of another Diabetes Blog Week. 😦

I always feel like one of the most special people in the world because I’m allowed to participate in Diabetes Blog Week. Once again, I’ve been able to write on some interesting subjects, I’ve been able to read other bloggers, and I’ve met a few new online friends. Karen Graffeo, you have my undying gratitude for creating something that always makes me feel closer to our community.

Now on to Friday’s topic:

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! (This topic is a suggestion from the 2016 #DBlogWeek survey.)

I’m going to make this short and sweet. I like to listen to music. A lot. When I’m at home, I’m as likely to listen to music as watch TV. So, in no particular order, here are ten Pandora channels that I actually have set up on my account. It may not tell you a lot about me (actually, the fact that I still use Pandora probably says a lot about me), but it will probably give you a look at some of my musical tastes.

Please don’t hate me for my choices… here goes:
 
 
1. 70s Scenario Radio (everything from Foreigner to Marvin Gaye to Led Zeppelin to The O’Jays)

2. Frank Sinatra Radio (a lot of Rat Pack stuff, plus guys like Bobby Darin and Mel Torme)

3. Gregory Porter Radio (Gregory Porter, Nina Simone, a little Etta James)

4. Merle Haggard Radio (guys like Merle, George Jones, Waylon & Willie)

5. French Cafe Radio (every version of La Vie En Rose ever recorded)

6. Broadway Showtunes Radio (self explanatory)

7. Cecelia Bartoli Radio (all Opera all the time)

8. Buckwheat Zydeco Radio (perfect for the weekends, plus the week leading up to Fat Tuesday)

9. Sara Bareilles Radio (Sara Bareilles, Norah Jones, KT Tunstall)

10. British Invasion Radio (artists from The Beatles and Rolling Stones to Petula Clark)
 
 
Are you surprised? What are some of your favorite things to listen to?

Diabetes Blog Week: Throwback Thursday– What brings me down.


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

Are you ready? Here comes Thursday’s edition:

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)

It’s true, Scott is fantastic, because he’s a nice guy and he looks at things in ways I often do not. At this stage of my life, I find that somehow comforting. I’m no longer intimidated by what I don’t understand.

Now, to the subject at hand. Like I stated in my post back in 2014, what brings me down most is watching others deal with their inner demons. At times, depression can be a debilitating chronic illness that makes life as much or more difficult than living with diabetes.

There’s a reason why I don’t watch many dramas on television these days. Let’s face it: the best dramas are the ones where the writers ramp up the tension as high as possible for as long as possible before the show’s climax. I have trouble feeling that tension for 55 minutes without any letup. It’s because even though they’re just characters in a TV show, I feel empathy for those feeling the tension, and I have trouble shaking that.

If I feel anything else emotionally about living with diabetes, it’s probably the guilt over the burden I feel I’m placing my loved ones under because of my diabetes. I felt it years ago when I couldn’t afford groceries, but I needed to order diabetes supplies and drugs to help me stay alive. I feel it now whenever I’m low and I can see the concern on their faces.

And even I am prone to the occasional bout with burnout. Who isn’t? There are times when I try not to think too much about it, and just do what I need to do until I feel okay again.

In fact, that’s how I often cope with these things. I don’t know how healthy it is to handle situations this way. But sometimes, I just focus on the next 15 minutes, and not on anything else. I can handle fifteen minutes. Thinking about everything all the time is asking too much.
 
 
Maya Angelou once said,

We may encounter many defeats, but we must not be defeated.
 
 
Coping is not a cure. But if we’re able to cope long enough, we can hopefully ease that concern of feeling defeated. We’re not meant to live a life full of drama and tension. Here’s hoping your days with diabetes are instead full of peace and happiness. Or loud music and happiness… as long as you’re happy, I’m good with either one.

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