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Diabetes Research: My Evolution Toward a Patient Revolution.

I like Dr. Victor MontoriHe’s a Mayo Clinic diabetes doctor and researcher who is working for a patient revolution – versus healthcare corruption – and for treatments that fit patients properly.  He and I are part of a PCORI team looking at user-centered design and the development of patient decision aids, and I had the chance to meet with Dr. Montori in person at the PCORI meeting in DC last month. 

What I like most about Dr. Montori is that he doesn’t say what people want to hear, but he says what he feels needs to be heard.  I respect the lack of bowing to the status quo, and the desire to improve the system.  Today, for Diabetes Month [insert blue circle confetti here], Dr. Montori has graciously offered to share his perspectives on why the patient revolution is important, and how we are all a part of it.

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Diabetes research: my evolution toward a patient revolution

by Victor M. Montori, MD, KER Unit, Mayo Clinic

I can only speak of the picture I have had a chance to see directly since I started my career as an endocrinologist in 2000. I am referring to my perspective about diabetes. I worry my perspective is narrow and skewed, but it is what it is. So here it is, offered humbly in case it helps.

My training as endocrinologist focused on conducting research with my mentor, Dr. Steven A. Smith, research he had oriented toward discovering better ways of caring for diabetes in the community. He taught me about the different ways in which clinicians and communities could support people with diabetes, and how, in health care, specialists and generalists needed to work together. He saw the role of endocrinologists more as architects, designers of systems of care, rather than as artisans, designers of care programs for individual patients. He made me aware of the challenges poorly designed health care adds to the already complicated lives of patients. And he made me aware of the complicated lives of patients and how terrible clinicians would improve their standing by either directly firing patients or by chastising the noncompliant ones who would then leave the practice. These clinicians would then boast that they did not have noncompliant patients and had no trouble keeping them all under 7%. This to me exemplifies the corruption of healthcare.

I think there is a direct link between those early lessons and those I have learned as a researcher and clinician focused on diabetes in the last decade. My band of sisters and brothers, the Knowledge and Evaluation Research Unit or KER UNIT, works closely with a patient advisory group comprised of patients with diabetes who have met monthly since November 2004 to support researchers like us in our work. Firmly keeping us patient-centered has been their key contribution. The KER UNIT was formed on the basis on three principles: generosity, integrity, and patient-centeredness. These are lived principles and we constantly refer back to them to make tough decisions. They have served us well. As a result, for example, we take no funding from for profit corporations, funding that could stand as an alternative explanation – to scientific judgment – for how we have summarized evidence or presented it to patients and clinicians.

We focused our first efforts as a unit to understand how we know what we know, as this translated into what we told patients to do. In doing so we found that much of our dogma is based on unreliable evidence, that much of that evidence fails to tell us if patients will be better off with our interventions, and that it focuses on a mythical molecule, the HbA1c. HbA1c is the outcome of choice for all clinical trials, the metric of quality for most quality improvement projects, and the only grade on the gradebook on the desk of the endocrinologist-as-principal. And when we asked patients, HbA1c was as important as death as an outcome for diabetes research! The manipulation of patients and clinicians was complete.

With my colleagues at the KER UNIT, we then turned our attention to shared decision making and developed the first tool to help patients and clinicians decide together if the patient should take a statin to prevent heart attacks or which diabetes drug to choose. Those tools, found on trials to be effective, have remained freely available and are used at least 10,000 times per month, around the world. By bringing transparency to the consultation, patients and clinicians could find what is best for each patient, based on what is possible and effective and on what matters to patients.

In 2009, we started to develop an approach that seeks to advance the goals of patients while minimizing the healthcare footprint on their lives. This work involves recognizing the work of being patient, understanding the burden of treatment, and learning how healthcare could be delivered in a way that is careful with what it demands and kind with the precious capacity patients have to do this work and to do the more meaningful work of addressing life’s urgent demands while pursuing their hopes and dreams. We call this minimally disruptive medicine, and we believe it is going to transform medical care, particularly for patients living with chronic conditions like diabetes.

This is particularly important for patients with chronic conditions like type 1 diabetes. Patients with diabetes study, work, and grow families, develop careers and volunteer, plan schemes and pursue challenges. Diabetes sometimes gets in the way, but care of of diabetes – organized often to satisfy economic and business urgencies, almost always gets in the way. Think of the difficulties of getting stuff paid, approved, coordinated, or delivered, of getting medications refilled, getting records shared with other clinicians and with patients. Paper work, time work, worry work. Technologies are helping reduce the healthcare footprint of diabetes in people’s lives, just as an increase awareness of the human cost of hypoglycemia is helping nuance the care of patients with diabetes in hospitals and clinics. Hopefully the endocrinologist-as-principal judging the patient only on the basis of HbA1c levels is an endangered species we will not save. Only competent and compassionate medical partners and clinics, able to be careful and kind, need apply. Our team is quantifying the work of being a patient with diabetes and bringing to consultations tools to uncover why patients may struggle to achieve their own goals.

Our latest pursuit recognizes the limitations of only innovating within healthcare. We think we need to fundamentally change medicine and re-orient healthcare toward the care of patients. To achieve that we need to change the way health care is organized, paid for, delivered, and rewarded. Clinicians, my colleagues, recognize the need to recover medical care of the patient from the industrialization of health care, but they declare their impotence. Thus, I strongly believe it is time for a patient revolution.

Perhaps the next big civil rights movement, the patient revolution will claim that people cannot be left out, priced out, of the care they need. They will claim that people cannot be exposed to less healthcare than they need, or more healthcare than they want, and that health care must fit their context. They will claim that healthcare cannot start and stop at the hospital door, but rather should be complemented by policies that improve the health of the community and reduce the impact of factors that promote chronic illness such as pollution, violence, poverty, inequality, inequity, loneliness, homelessness, and poor nutrition. Through individual advocacy (not for a single disease or for a loved one alone) and collective action (not the walk, the run, the ride, or the bucket) we can bring change to make healthcare more about care for and about the patient. I invite you to mobilize your friends and family and to join the patient revolution.

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Thanks, Dr. Montori, for sharing your thoughts.  As patients and caregivers touched by diabetes, how can we be part of the revolution?  Patient voices and perspectives are not new.  We are the revolution.

Bionic Pancreas Update and Call to Action.

A few weeks ago, I met with Ed Damiano and we spent an afternoon talking about recent developments in the bionic pancreas program and what’s up next.

“Here’s our new device,” he said, placing the iLet on his desk, inadvertently putting it right next to his cell phone, which didn’t look much bigger/thicker by comparison.  (I asked for a quarter for comparison, because otherwise this thing could look as small as a whisper, or as big as a toaster, depending on how you feel about devices that day.)

“It’s pretty.  In that device sort of way.  So this is the single device, right?  No more two pumps, one CGM receiver, etc?”

“Yes.  We have two different cartridges in this single device – one for insulin, one for glucagon – that will absolutely not fit in the wrong way.  You can’t make a mistake; there’s no cross-channeling.  The cartridges are already filled, so they aren’t dealing with air bubbles.  There’s no LCD in this device, as that contributes to the bulk, and the e-ink screen [similar to that of an Amazon Kindle] has good contrast and good resolution.  It also has capacitive touch.”

I’ve seen the older device in action at Clara Barton Camp last summer.  It was amazing to hear what little kids thought about wearing three different devices.  But one device should be easier to tolerate, especially when your blood glucose is in range as a result.  So what’s the next step?  How does this thing go from on your desk to on my hip?”

“The iLet exists because of donations from people who believe in this project.  We want to build the consumable parts of this within the next nine months – that’s the infusion sets, tubing, and caps.  We’re on track to do that if we can get the money raised throughout the end of this year.  1.5 million is our 2015 goal.  The next big goal is to test in clinical trials by the last quarter 2016.”

“Tell me more about the clinical trials?”

“Trials will take place in four different sites, out-patient study that’s several weeks long.  It’s a bridging study that goes from the iPhone-based system to the iLet – helps pave the path final pivotal trial.  The pivotal trial takes us straight to FDA submission.  Each study substantiates and builds confidence between investigators and agencies.”

As a person with diabetes, it’s weird to be reminded of many hands are involved in allowing access to technology development and release into the wild.  And how much money is required.

“Can you show me how far we’ve come?  I saw the new iLet device at Friends for Life this summer, but some perspective would be awesome.  What did the first iteration look like?”

Ed’s team kindly dug back into the archives for this photo, which shows the old laptop-based system attached to a study participant.  (And for another old-school take, you can read Abby’s experience with the clinical trials here and here.)

From a team and a laptop and tubes and wires to a single device.  This is the kind of progress that excites me, because it’s happening NOW and the results have already changed lives.  After close to thirty years with diabetes, I’ve seen progress that has made insulin delivery easier and glucose monitoring easier, but the bionic pancreas is a whole new and astounding shift towards life with diabetes.

“And once it’s all said and done, there will be a device similar in look and feel to what I’m using now, only it will be a closed loop.  Which means the pump and the sensor talk to one another, and work with one another independent of my interaction.  Which means I don’t have to think about diabetes nearly as much.  Maybe not much at all,” I said to Chris, all in one breath, when I got home.  “I’m excited.  This is exciting.  I haven’t been this excited in a long, long time about diabetes.”

I believe that the bionic pancreas technology will make my diabetes less of an intrusion, ripping the dangling preposition “with diabetes” off of my life.

To learn more about the bionic pancreas program, please visit the website.  And if you believe in this mission, please consider making a donation to the project.


All Night Long.

It started out innocently enough.  Just a wiggly little drop before bedtime with a bit of insulin on board, so the need for snacking was elevated.

With .8u IOB. Snacktime. #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

A small handful of raisins and I’m on my merry way.  No worries!

But then 2.30 am hit and I was in the trenches again.  Dexcom alarms were blaring, texts from my Share friends were pinging, and the sweat was beaded up on my brow.

At least my phone is fully charged this time? #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

But no worries!  All night long lows?  I’ve got this.  Juice box plus temporary basal rate should bring me up juuuuuust fine.

Then Dexcom alarms went off again at 4 am (this time, I was a little high from over-treating the low). Corrected that shit.  No worries.  (Kind of worried.  I am tired.  When do I sleep?  Maybe tonight.  Aw fuck it – let’s dance.)

Diabetes is all night long.


The team at Disney’s T1D Everyday Magic asked for some meme’ry from some folks in the community.  Here’s mine.  (And you know how I feel about cupcakes.)

Check out the rest, and for more T1D Memes, there’s a whole awesome site:)

Sticky JMedical Giveaway Winner.

Through a very official and terribly complicated process of asking a friend to pick a number between 1 and 169, we have a winner!  Congratulations to Jennifer, who is a sentimental fan of Kermit.

(Yeah, I called you sentimental.  Mostly because you told me to.  Also, Sentimental Jennifer, I sent you an email this morning, so please check your inbox!)

A big thanks to everyone else who entered.  If you are interested in checking out the bracelet online at Sticky JMedical, click this link.  As far as Muppet responses, the diversity was incredible, but my favorite was the person who mentioned Bean Bunny.  (Also, did you know there is a Muppet wiki?  Say goodbye to the rest of your morning.)

Happy Friday!  And thanks for playing.

Looking Back: Of Cocktails and Community.

Today, after a lovely morning at the dentist (once again fixing this issue), I’m recovering from a half-droopy novocained face and, as a result, am looking back at a post from 2013 about search engine optimization, diabetes, and cocktails … sort of.

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“So what you should do is see what people are searching for and then carefully tailor your posts to draw in those searches. Pick the search engine terms that there isn’t a high competition for, giving you an advantage in Google’s search algorithm.”

The example he used was pretty simple: “10 Best Cocktails for People with Diabetes”

In a discussion during the European Bloggers Summit in Barcelona (running alongside EASD), a search engine optimization expert gave a presentation about seeding blog posts with keywords in order to cast a greater net for readership. The SEO strategist was helpful, and had wonderful advice for people who were churning out content to get it read, but my body had a tangible reaction to this kind of advice. I felt myself prickling with frustration because is this really what people are writing for? Page views?

No freaking way. Not in this community.

So the top ten best cocktails for people with diabetes? Fucking sure. Let’s do this, social media-style:

  1. The #DSMA: Take 140 characters, a hashtag, and equal parts honesty and humor and mix them thoroughly in Twitter. Tastes best on Wednesday nights at 9 pm EST.
  2. The Blogosphere: Start with a URL or a Feedreader and slap it into the search bar on your mobile device, tablet, or computer, or Google “diabetes blogs” for a list of ingredients. Mix reading these blogs throughout your day for a boost in diabetes empowerment and community.
  3. The Flaming YouTube: Search through YouTube for diabetes, or “diabetes math,” or “breaking up with diabetes,” or “changing the song on my Animas Ping” and you’ll find a slew of video combinations to add to your playlist. (Title the playlist “Cocktails for Diabetics” and you’ll probably get a lot of search returns, but you’ll also find people who want to be found.)
  4. The Instagrammed: Take your phone, photograph any ol’ diabetes bit or piece in your house, and mix with Instagram to create a frothy, fun mix of Dexcom graphs, race bibs, brave new infusion set sites, Halloween-candy-casually-pretending-to-be-hypo-treatment, and friends who understand.
  5. Facebook Your Face: Take your Facebook account and stir gently with groups, hashtags, and posts about diabetes. It may take a while for this mixture to fully set, but once it does, you’ll have a shot of community you can take in one sitting, or something you can sip on and scroll through for hours.
  6. The Friends for Life: Take one part people with diabetes, one part caregivers, one part educators, one part inspirational athletes, one part Disney World, one part green bracelets, and a billion parts love and throw into a salad shooter and spray that stuff everywhere because in-person diabetes meet-ups and conferences will break your heart and mend it within the course of a week.
  7. The Group Text: No specific ingredients, but a drink best shared with many. And at 3 am.
  8. The Call Me: Best served when low, because a phone call to another PWD who understands is the best way to keep from over-treating.
  9. The Honest-Tea: Equal parts empathy and honesty, this cocktail is a must for people with diabetes who are looking for confirmation that they aren’t alone. It’s not about enabling, but empowering. (Goes really well with a side of Communi-Tea.)
  10. The Hug: Social media is great, but nothing is better than a hug between two people whose much-loved pancreases have taken an extended leave of absence. There is no set ‘best time’ for this cocktail – serve immediately and enjoy.

The one in the middle looks like pee, to me.

People in the diabetes community don’t communicate with one another for page views or Google search prowess. Of course, not everyone’s intentions are the same across the board, and there are people who immerse themselves in a community looking for things that aren’t as altruistic, but the majority of interaction in the DOC, from what I can see, is between people who need each other. That’s why so many of us started doing this, and it’s why so many of us continue.

Because when Google redoes its algorithm and there’s a new system for search engine optimization, when there’s an upheaval in what’s considered the “it” platform for social media, the song remains the same for the DOC. Diabetes, for many, isn’t just in your body but also resides full-time in your head, and managing emotions and support is as essential as insulin (and with a significantly lower copay). It’s not about where the discussions are taking place; it’s about the discussions that are taking place. So “drink” up!


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