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Posts from the ‘Diabetes Online Community’ Category

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.

 

Spare a Rose: 2015 Results.

This year, the total raised for IDF’s Life for a Child program through the Spare a Rose, Save a Child campaign was $24,229.

We aimed to raise money and awareness for kids in developing countries who are without resources and insulin, and we raised money.  And awareness.  For the third year running, the diabetes community as a whole pledged their time, money, and outreach to touch the lives of people we’ll never meet but who have a chance to thrive based on our willingness to give.

If that’s not inspiring, I’m not sure what is.

In these beautiful images created by Mike Lawson from Diabetes Hands Foundation, you can see how far that money goes.

[More on the Spare a Rose 2015 results here]

Thank you, each and every one of you, for your support for Spare a Rose.  Your blog posts, Tweets, emails to friends and family, you reaching into your own pocket to share just a little so that others can continue to live … every little thing you do, matters and resonates.  Spare a Rose has closed out for 2015, but the influence of our collective contribution will last a lifetime.  And will provide a lifetime.

Our global community thrives and continues to inspire, thanks to all of you.

 

Animas Vibe: A Few Weeks Later.

Again, disclosure:  I work with Animas and have a sponsorship contract.  Here are more details on my disclosures. And this is the Mr. Plow theme song.  Mr. Plow would be great, about now, since the snow keeps dumping down outside.

It’s been several weeks since I’ve switched to the Animas Vibe insulin pump (with integrated CGM technology – doesn’t that sound like a rehearsed phrase?  How about “insulin thing with CGM thing built in and have you seen my coffee, pleaseandthankyou.”), and I thought I’d take a crack at some second impressions, since the first impressions were only compiled after a few days.

Talking ‘Bout CGM:  I am still into the concept and application of having one device that does the work of two.  While the Vibe still requires that I wear an insulin pump infusion set and a CGM sensor as two separate insertions, it removes the need for an external CGM receiver.  I wrote about this last time, but to reiterate:  I am okay with not using the separate receiver.  I’ve traveled a lot in the last few weeks and the first few trips, I brought along my CGM receiver so I could plug it into the SHARE port.

For the record, I still haven’t upgraded to the 505 software.  Judge all you want.  :)   Which may explain my identical CGM graphs.  (And, also for the record, I’m really, really excited to see the new Dexcom receiver.  That may change how I feel about clouding, as it would be much simpler.)

But then Chris and I came to realize that we aren’t good at this whole “data sharing” thing.  As much as it sounds like a good plan in theory, we aren’t good at the application of it.  I think this becomes a patient-specific preference sort of thing, and for this PWD, I’m not a data-sharer.  But as I mentioned with that previous dead horse that I keep flogging, I like options.  Love them, actually.  And anything that gives data options – LIFE options – to people touched by diabetes, I am all for it.

(That sentence was a grammatical nightmare.  Ignore the sloppy parts and move on, yes?)

DiasendYesterday, for the first time in a long time, I downloaded (uploaded? loaded.) my data to Diasend.

The data collection portion is cumbersome.  I hate dongles and charging cords and all the extra beeps and wires required to make sense of diabetes data.  (Which is why I’m such a fan of the Verio Sync idea, which uses bluetooth technology to automagically suck the results off my meter and spit them into my iPhone, but there are issues with that system, too, because it’s only iOS compatible.  Pluses in one way, minuses in another.  But see aforementioned “I love options” sentiment, because it still applies.)  But I did download my pump data, which also downloaded my CGM data.  And, because I was feeling ambitious, I uploaded my glucose meter, too.

So this was my first time looking at Diasend with information about my insulin doses, glucose meter results, and CGM results on the same screen.  (No, I am not sharing my results.  My numbers have been absolute shit lately and I’m not going to pepper my blog with confirmation that I have diabetes.  I’ll let the c-peptide test that’s required by my insurance in order to cover my insulin pump serve as that confirmation.  Yes, that’s a thing.  Yes, more on that later.)

Diasend is good for granular information, but the information on the “compilation” tab was ace for me.  Seeing my blood sugar averages based on time of day was powerful.  (I have midnight to 11 am nailed and awesome.  Everything not in that time frame needs a solid snuggle these days.)   As a Mac user who hasn’t explored the new Dexcom/Mac Portrait (I’m woefully behind on everything that doesn’t involve Birdy these days), seeing my Dexcom data on my laptop is amazing.  I’ll be exploring Portrait in the next few days but in the meantime, I’m happy that information can be siphoned over to Diasend.  And it puts the constant flow of data into digestible context.

Pump Stuff.  Since I was a Ping user before, using the Vibe feels familiar and easy.  I’m still glad this sucker is waterproof and the button clicking process is familiar to me.  All of that feels the same.  One thing I have noticed is that the more my CGM needs attention, the faster the battery in my pump needs replacing.  This is annoying, but makes sense despite the annoyance.  For the first time ever, I’ve invested in lithium batteries for my pump and it seems to hold much better than the alkaline ones I have been using for the last … forever.  But overall, the pump feels familiar and comfortable, and since I hate change, that familiarity is a plus for me.

Alarms, for whatever reason, remain easier to hear and feel when they are coming from the pump.  This was a huge concern of mine because I thought the pump alarms would be muffled by clothes and bedding, making them hard to catch.  But I actually respond to low and high alarms more readily on the Vibe.  I am not sure why.  Maybe because it’s attached to my hip and I feel the vibration?

What remains to be seen is how the changing state of Dexcom progress will affect my feelings about this pump.  Right now, it’s the only one integrated with the CGM I already use, so that’s a huge plus.  But I am concerned about the fact that the software in the Vibe is already behind on the current Dexcom system.  I know the FDA process creates hurdles that are hard to clear, but since the Vibe has already cleared the Big One, can I expect that updates and upgrades will come fast and furious?  As a PWD using the Animas product, I hope this is the case.

And lastly, I’m hoping to have this pump covered by my insurance company.  I’m still trying to get a c-peptide test done (travel, snow, and issues with fasting) to fulfill the requirements issued by Blue Cross Blue Shield, so that journey remains ongoing.

Thankfully, I’m still pretty effing sure I have diabetes.   So yay?  Yay.

The Friday Six: Spare a Rose, Toaster Selfies, and Inhaled Insulin.

Happy Friday morning, she writes from the train that is scrambling up the eastern seaboard, going from No Snow to OMG Snow.  While I’m looking forward to getting home and returning to the Birdzone, I’m not exactly thrilled to see what this week’s snowstorm dumped onto our home in Rhode Island.  (Also, almost wrote “snotstorm,” which, if you know me at all, would be the worst natural disaster that could ever, ever come my way.)

Today I’m working through my inbox and sharing what cropped up as curious.  Have at:

Updates on inhaled insulin from the team at diaTribe.

A sample of what Dr. Korey Hood and I partnered on this week – talking about diabetes management, the importance of options in technology choices, and Animas Vibe[Oh hey there, disclosures.]

“A few weeks later Letamendi opened her new issue of Batgirl. In it, she found a shocking surprise. Simone had turned Letamendi into a character: Batgirl’s psychologist.”  This article is so cool.

Berci at ScienceRoll takes us through the current and future state of diabetes technology.

“I am lucky to have such a great best friend, and I know that down the road, on my wedding day, she’ll be there not only to straighten my gown train, but also to remind me to check my continuous glucose monitor.”  Great insight on friendship from Lauren.

Exploding kittens.

“But I was most struck by the realities of the family’s daily routine. Grace’s mother, Patricia, who is the sister of my boss at Saddleback Leather Company, where I am a filmmaker, told me about nights punctuated by alarms to get up and check her daughter’s blood sugar, at ‘midnight, 3 and 6.’” The opinions on this NYTimes article couldn’t be more diverse.  I’ve decided that I actually can’t decide how I’m most comfortable diabetes being portrayed, as I struggle to walk the line between “I’m fine/I’m sick.”  Your thoughts?

Flowers die, children shouldn’t.  The Spare a Rose campaign starts on February 1st.  Please consider joining the diabetes community in supporting our own.

The Boston Yeti almost replaces The Real Bigfoot as my favorite Twitter account.  Almost.

When emotions drive health behaviors.

Kim takes on the benefits of growing up with type 1 diabetes over at T1EverydayMagic with some fantastic cartoons to illustrate her point.  (GET IT?!)

“I think she felt bad for me. She acted as if it were cruel that I’d had to pay “a lot” of money for medicine to keep me alive, medicine for a disease I couldn’t help having. How thoughtful of her.”  Getting insulin in France.

Selfie toaster.  Bring on the gluten-free edible faces of my cats!

One Voice.

[Disclosures first:  I attended the Partners in Patient Health Summit yesterday in Washington, DC, which was an event sponsored by Sanofi.  They paid my travel and lodging.  I paid attention and generated my own opinions.  Now you know.]

At the Partners in Patient Health Summit yesterday, there was a spirited discussion about the power, and then the powerlessness, of the diabetes community.  John Schall, CEO of Caregiver Action Network, told the group (and I’m paraphrasing) that he was disappointed to see a community with so many people in it, yet so powerless.

This statement stuck with me because it forced me to step outside of the diabetes comfort bubble, and as the conversation moved forward, I wondered why we, as the diabetes community, have such a hard time coming to consensus on things. Why are we so disjointed, at times, in this space?  Diabetes, in my case, is a disease that will span decades and has been present for the vast majority of my life, causing relevant issues to shift with time.  When I was diagnosed at the age of seven, my parents needed support in taking care of me and my main priority was getting to soccer practice, or turning in my homework.  As I’ve grown older, priorities changed to include staying healthy to take the best care of my daughter.  “What matters most” is redefined every few years, but at the core, what matters most truly is my health.

Later in the afternoon of the summit, advocates from other health conditions took the stage to talk about what has worked, advocacy-wise, in their community and where they’ve drawn success from.  A common message from the other advocates was that consistent messaging matters, and to be heard, we have to speak with “one voice” as much as possible.

Can we speak with one voice?  Can the diabetes community come to agreement on two or three issues that we can rally behind with passion and conviction, raising awareness and our voices?

What can we, as a group rally behind? Where are our common goals? And how, for crying out loud, can we bring them to fruition?

(And to check out some of the discussion from the Summit on Twitter, take a look at the #diabetesPIPH hashtag.)

#WeAreNotWaiting: The (Not So?) Brief Story of Tidepool.

Technology has scrambled forward by true leaps and bounds in the last few years, making my Clinitest urinalysis kit of 1986 seem pretty archaic.  Now, people touched by diabetes can see their glucose levels with a flick of their wrist, and there’s more on the horizon as far as data and diabetes management.  Today I’m so happy to have Howard Look, President, CEO and Founder of Tidepool, sharing his personal diabetes story on SUM, talking about why he simply cannot wait.

*   *   *

“Katie, why are you going to the bathroom again?”

“I have to go! And I’m SOOOO thirsty!”

Our story is probably familiar: We were on a weekend camping trip and all together in our family-sized tent. Katie, now 14 but 11 at the time, had gotten up THREE TIMES that night, unzipping the tent and wandering with her flashlight to the campground bathroom. The next morning, breakfast was the usual campground fare – several glasses of orange juice and pancakes.

By noon, Katie was throwing up.

It was an exciting time in our family, full of possibility. Katie had just started 6th grade at a new school. She was making new friends, trying out for the softball team, and was ready for new challenges and a new chapter in her life. Who knew.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

A day later, we were at Lucille Packard Children’s Hospital at Stanford. I just wanted someone to say “Don’t worry, your daughter is not going to die.” I wasn’t so sure. After a sleepless night and a morning full of words we didn’t understand (beta cells, boluses, ketoacidosis…) our heads were spinning. Fortunately, our day-one angel, Jen Block, looked Katie straight in the eye and calmly reassured us: “Katie, I just want you to know that everything is going to be OK. You are going to be fine. I have type 1 diabetes just like you.” Jen showed Katie her insulin pump and explained how she could have the same thing. In Jen, I could see a grown-up Katie. And finally I knew everything was going to be OK.

Well, sort of…

Like Crawling through Broken Glass
I’m a nerd, a Geek Dad. I’ve lived and worked in Silicon Valley since college and have been really fortunate to be a part of some really cool things: I was on the founding team at TiVo and was VP of Software at Pixar. Just prior to Tidepool I was VP of Software at Amazon.

Like geeks do, I dove in to try to understand what T1D was all about. Katie had mastered computing doses and giving herself shots really quickly (great at math, that’s my girl) and we saw the value in an insulin pump and CGM right away. Within three months, Katie was on a pump and a CGM.

I tried to get us up and running with the software that came with her pump. Bzzzzzt. No sorry, thank you for playing. It won’t work with your browser. OK, you made it work with your browser, but your plugin is out of date. OK, you updated the plugin but BEWARE: it’s an unsigned app that you shouldn’t trust. OK, you are willing to take that risk, but your new computer has USB 3.0 and the USB stick isn’t compatible with that.

Some people wonder why almost no one uploads their pump data… I think I know why: because getting it to work can be like CRAWLING. THROUGH. BROKEN. GLASS. And remember: I’m a software guy, a Geek Dad… I usually LIKE dealing with this stuff. But I found that even if you could get it all to work, the software didn’t provide intuitive, actionable insights.

To make matters worse, Katie didn’t like her first CGM. It hurt to put it in (we called it “the harpoon”) and it wasn’t accurate for her. Fortunately, the Dexcom G4 had just come out, which worked MUCH better. It hurt less and gave readings that were dead-on with her BGM.

But unfortunately, Dexcom Studio is PC only we are a Mac family. I sorted that out (with Parallels for Mac), but still, we had one piece of software for the CGM, a different piece of software for the pump and BGMs, and no way to see it all together in one place.

I asked myself, over and over:

Why is this so hard? And WHY ISN’T ANYONE DOING ANYTHING ABOUT IT???

Right around that time, fellow Geek Dad, T1D guy and tech blogger Scott Hanselman posted
The Sad State of Diabetes Technology in 2012”. I was fist pumping and shouting “Yeah! What he said!!!” while reading it. If you scroll halfway down the comments, you’ll see me chiming in:

“… I have a dream that a smart, motivated team of people could create ‘The Mozilla … of Diabetes Technology.’ … What if we … did it in a way the wasn’t constrained by VC funding and sought goodness, not profit?”

Scott’s article catalyzed me to take action. I met with anyone that would talk to me and looked for people who felt like I did. Jen Block introduced me to Lane Desborough (at Medtronic at the time), who introduced me to Aaron Kowalski at JDRF, who introduced me to Brandon Arbiter, who had invented this amazing app called Nutshell. I had found my peeps.

Jen also introduced me to Dr. Joyce Lee, who connected me to Dr. Saleh Adi at UCSF, and to Steve McCanne, yet another Geek Dad (or as I called us “D-Dads with Attitudes”). Steve also has a teen daughter with T1D, and had been hacking some code to make it easier for Dr. Adi to review his daughter’s data, all in one place. When I saw what Steve and Dr. Adi and the team at UCSF had put together, I knew it was the start of something beautiful.

#WeAreNotWaiting
Fast forward to now, early 2015. Tidepool has existed for just over a year and a half and I’m really proud of what we’ve accomplished in a very short period of time. As the hashtag says, #WeAreNotWaiting.

In the beginning, we got funded by some very generous donors. That allowed me to hire an amazing team of developers and designers. Six of us have T1D, and two of us have family members with T1D. We like to say “We have pancreas in the game.”

Our mission is simple: Deliver great software that helps reduce the burden of managing T1D.

We’re tackling that mission in a pretty unique way:

  • We are a non-profit. We’re not in this for the money. We’re in this to help make things better for the whole diabetes industry. By not competing, we can get more done.
  • We are an open source project. This lets us leverage a vibrant, motivated community. It also means we are giving away the source code for free.
  • We feel strongly that design and usability matter. T1D is a burdensome disease. You don’t need the software to be making it worse.
  • We are building everything with the utmost attention to privacy, security, HIPAA and regulatory compliance. Yes, this is more work and takes longer, but without this, we can’t achieve broad distribution and help as many people as possible.

Most importantly, we are helping the industry see the value in liberating device data. We’ve made it very clear: We believe that patients own their own health data. People should get to choose what software they want to use to for their diabetes therapy with that data.

We’ve made great progress on the open data front: Asante, Dexcom, Insulet, Tandem and Abbott have all given us their data protocols. We also have great supporters at Animas and Medtronic and they are considering it. We will also implement and support the IEEE 11073 standards for BGMs, CGMs and pumps, which will make it that much easier for device makers to create interoperable products.

What is Tidepool building, and where are we headed?
The Tidepool Platform enables the next wave of diabetes applications. It’s secure, HIPAA-compliant and lets you choose how you want to see and share your data. We hope that it will foster a whole new ecosystem of applications that help reduce the burden of T1D.

The Tidepool Uploader gets data from any diabetes device that has made their device protocol available.  It’s a Chrome Extension, so it works with Macs and PCs (and Linux, too, if you’re a geek like us :) . JDRF generously funded development of the Uploader. The project will also make it easier to gather data that will be useful to artificial pancreas researchers.

Blip is the home for all of your data. You can see it all in one place. You and the people who support you can use Blip to look, learn and make informed decisions together. Blip is currently being used in a pilot study at UCSF. We’re talking to other clinics like Stanford as well. We hope to have Blip ready for broad testing and deployment in the first half of 2015.

Nutshell is a mobile app that remembers what you ate and ties it together with your diabetes numbers. The next time you order that burrito, you can figure out how much insulin you need with confidence. Nutshell currently exists as a working prototype and we’re looking for funding to take it further.

Going forward, we have lots other projects to tackle:

  •  We’ll be asking users if they’d like to donate their data to an anonymized research database. We plan on exposing that database freely. We also plan on creating the “Tidepool Query Language” and APIs that will enable researchers to easily use our platform to conduct studies based on device data.
  • We will integrate fitness data from apps Strava and RunKeeper and devices like FitBit and FuelBand.
  • Our platform is the perfect foundation for artificial pancreas research and commercialization.
  • We’d love to build an advanced decision support interface that will help people and their doctors optimize their insulin therapy. We have a prototype of this called Sonar.
  • Some device makers will choose to let us host their data and applications. For them we’ll need to expose APIs so they can access their device’s diagnostic data and let them connect directly with their customers. We hope to generate modest revenue by doing this so that we can become a self-sustaining non-profit.

Which brings us to…

How you can help?
Most importantly, we need your financial support. So far, we’ve had some very generous donors who have supported us. Unfortunately the funding that we have received up to this point is not enough to get us to where we need to be.

The good news is that we have a solid plan to generate just enough revenue to break even and become a self-sustaining non-profit, hopefully by the end of 2015. That means that you can think of your donation as an investment in the future of diabetes technology. There is no financial return on this investment since we are a non-profit, but you will definitely rack up Good Karma.

There are other ways you can help to. If you are a developer, tester or UI designer you can volunteer as a contributor to the project. Join us at https://developer.tidepool.io for more detail. If you have experience with regulatory filings, you can help us with those. It’s a lot of work!

If you want to stay in touch with us and hear about updates, you can sign up for our mailing list at tidepool.org, join us at facebook.com/Tidepool_org and follow us on Twitter @Tidepool_org.

Thanks to Kerri for letting us take the mic for a little while, and to the entire diabetes community for your ongoing support of our efforts.

#WeAreNotWaiting

Cheers,
Howard

*   *   *

Howard Look is the founder and CEO of Tidepool, a 501c3 non-profit with the mission of reducing the burden of managing diabetes through technology. Prior to Tidepool, Howard  was on the founder’s team at TiVo where he was VP of Software and User Experience. He was also VP of Software at Pixar, where he led the team developing Pixar’s proprietary film-making system, and at Amazon where he ran a secret software project to develop devices that leverage cloud services. Howard has a BS in Computer Engineering from Carnegie Mellon University. His teenage daughter has T1D.

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