On Friday, Nov. 15, we gathered with about 120 people at Stanford School of Medicine for the 2013 DiabetesMine Innovation Summit -- a small-ish gathering designed to spark interactions and discussions that lead to faster, better development and design, and improved access to innovations that will improve life with diabetes. That was a long-winded way of saying: it's all about new and better ways to improve life with diabetes.

This is the third annual gathering of patient advocates (our Patient Voices Contest winners + DOC leaders) with pharma marketing and R&D folks, web visionaries, experts from venture capital investment and innovation, regulatory experts, clinicians, mobile health experts, device designers and more.

DBMine Summit 2013

 DiabetesMine 2013 Summit kickoff

Innovation 2015

 

Present this year were passionate individuals from the following organizations: ADA, JDRF, FDA, the Diabetes Hands Foundation, Close Concerns, Joslin Diabetes Center, Sansum Diabetes Institute, the California Healthcare Foundation, Tidepool, Pancreum, Abbott Diabetes Care, AgaMatrix, Asante Solutions, Ayogo Health, AstraZeneca/Bristol-Meyers Diabetes Alliance, Bayer, BD Medical, Dance Biopharm, Dexcom, Glooko, Hygieia Inc., Insulet Corp. Labstyle Innovations (Dario meter), JnJ Animas & Lifescan, Eli Lilly, Medtronic Diabetes, Misfit Wearables, Novo Nordisk, Pyxera, Roche Diabetes, Tandem Diabetes, Target, Sanofi and Valeritas + Aetna, Capital Blue Cross, Humana, Kaiser and the Arkansas Health Benefits Exchange (click here to see which organizations were sponsors this year).

There were also passionate endos and HCPs present, such as Bruce Buckingham and Jen Block of Stanford, Richard Jackson of Joslin and Nancy Bohannon of St. Luke's Hospital in San Francisco. Not to mention some familiar D-community faces in Kelly Close, Manny Hernandez, Bennet Dunlap and Karmel Allison (let me now I left anyone out!)

A few who had to cancel at the last minute were unfortunately our payer panel participant from United Health, one participant from Omada Health, and the T1DExchange exec who had hoped to join us. I should also note that I spent months chasing after CMS/Medicare folks, hoping to get them involved, to no avail.

Here's a look at the agenda:

AGENDA - 2013 DiabetesMine Innovation Summit

 

As you hopefully know by now, we unveiled the results of our big independent study on PWDs' sentiments about diabetes technology and their own care at this event, along with a brand new video: "Diabetes Technology: What Patients Really Want" (shout out to Scott Hanselman for his contributions there).

So what happened at this event? Many were intrigued while following our hashtag #dbminesummit, picking up on the fact that things got heated in the room that afternoon.

Well, a heck of lot happened: a ton of great discussions and connections, some eye-opening updates from FDA and the diabetes "hacker" world, a payer panel that experienced some shockwaves when a number of patients and providers aired the bold truth about their insurance frustrations, and an afternoon brainstorming session that brought everyone back to a collaborative space and produced some very interesting concepts about how to move forward. Innovation visionary Joseph Smith of West Health was also phenomenal with his wrap-up on "The Innovation Cost-Reduction Equation," although his slides don't do him justice; you had to hear him in person!

Our theme this year was how to deliver on the promise of diabetes technology?

And by that we mean: we have some very advanced technologies already on the market — and many on the verge, and we all agree that these tech tools have enormous potential to help patients achieve better outcomes.

But how exactly is that going to be realized?

How can we assure valuable 'return on investment' for all parties involved in both giving and receiving diabetes care?

Especially patients? What are they really getting out of using all these tools?

This is not a trivial challenge! (as our survey results suggest)

The obstacles seem pretty clear:

  • First, many of the devices STILL aren't as life-friendly as they should be, which is a huge barrier to use.
  • And we STILL have a system in which various entities are working for themselves, in "silos" as we say. Some progress has been made, but I only wish I could say that all players (pharma!) had achieved a true landscape of collaboration -- the focus last year's Summit.
  • Plus the fact remains that many patients are not educated and don't the have resources they need.
  • The high costs of these tools and healthcare coverage limitations are HUGE barriers.

And let's face it, the reality is a misalignment of economic interests in our system -- the awkward dynamics of patients out there trying to take care of themselves; the pharma companies and device manufacturers trying to sell products (because that's what they do!); and the payers (insurers) trying to pay as little as possible (because heck, that's their business model).

One thing I noted during the Summit and want to reiterate is this: Nobody needs to be ashamed of making money off diabetes. If there weren't a "market," then no one would bother making a better pump, faster insulin, a more accurate CGM, or any of the tools and treatments we so desperately need. Don't just take it from me; read Karmel Allison's excellent post on this topic. Frankly, we're fortunate type 1 diabetes is getting the attention it does.

But finding common ground between these competing interests is essential to improving the messed-up healthcare system in this country -- and to improving life with diabetes of course!

DiabetesMine - common ground

That's what this event was all about.

There's much we're still processing on the heels of this event -- on how the talks this year can lead to actionable programs for change, and what milestone(s) are realistic to hit by this time next year. But for now, some quick highlights of this year's proceedings:

* Courtney Lias, Div. of Chemistry and Toxicology Devices talked about the FDA's new program for accelerating innovation and their new patient portal. But most importantly, she actually stood at the mic and called on our room full of pharma folk to adopt diabetes data & device interoperability standards. She actually said that!  She said FDA can't mandate these standards, but once the industry embraces them, they'll become obligatory to succeed in the market -- good news for us customers! Fortunately, the Canadian group taking the lead on writing these standards was in the house, too, making connections around their work drafting IEEE standards for diabetes devices.

* Howard Look of Tidepool gave an inspiring update on progress on diabetes data and devices -- all being created by small, independent, patient and caregiver-led groups like Tidepool itself. Actually Howard and one of our Patient Winners from 2012, Sara Krugman, helped co-host the first-ever DiabetesMine D-Data ExChange that took place at Stanford the day before the Summit, on World Diabetes Day, Nov. 14. About 30 people attended that four-hour gathering, with 16 amazing presentations on diabetes-data projects that could change our lives! Howard's presentation at the Summit was a debrief about the projects presented the day before, along with the great work of his ever-expanding team at Tidepool. The mantra that came out of that day/group was: "We're not waiting!" i.e we're charging ahead on creating these interoperable solutions ourselves despite industry and regulatory roadblocks. Woot!

* Anna McCollister Slipp, a data entrepreneur herself at Galileo Analytics and patient representative on a number of FDA committees, gave a follow-on to last year's cry for more patient voices in formal healthcare decision-making processes. This year, she essentially said that we patients need to stop waiting on FDA, industry or legislators to change our world. Instead, we need to do a better job of grabbing the reigns ourselves as patients.

Discussing Disconnects

Following lunch, patient winners Kyle McClain and Christel Aprigliano helped present our survey data. Interestingly, the core learnings of that study can be boiled to a number of disconnects, as summarized in the slide below. Basically, patients feel that outcome measures are not patient-driven (too much focus on A1C, not enough on anything else); high costs and insurance access issues are what drives adoption and use of diabetes tools to an enormous extent; and we found that "Adherence" or "Compliance" even among highly motivated and engaged patients depends A LOT on whether the tools we get are offering us real, practical value that doesn't just increase hassle. No surprise to us patients, ay?

These disconnects became the theme of the day.

DiabetesMine learnings summary

 

And nowhere were "disconnects" more obvious than during our two-part Payer Panel, in which representatives from Aetna, Capital Blue Cross, Humana, Kaiser and the Arkansas Health Benefits Exchange each had 10 minutes to talk about the impact of the Affordable Healthcare Act on their diabetes policies and innovation, followed by an extended discussion and Q&A. The first round of questions was rather design-focused, as led by panel moderator Tad Simons of Pyxera. Then we broke for lunch and asked each table to discuss the questions they'd like to pose to the panel, and had Tad collect these questions, in the hopes of having him "cull the queries" to cover all the bases. But there was no holding back this crowd! For many of us, it was the first time ever confronting decision-makers at these huge insurance organizations that seem to have a stranglehold on our lifeblood -- coverage of the medications and devices that keep us alive. Many patients and providers in the room were just plain... angry. Not at these particular individuals per se, but at the whole reimbursement system that seems to be so far removed from the needs of patients whose lives depend on it.

What became glaringly obvious is that there's a lot of work to be done helping to connect patient advocates with insurers in productive ways -- so they begin to understand our reality in grappling with the system.

The whole thing reminded me of what my colleague Mike reported from Sanofi's recent Partners in Patient Health event, that highlighted the big disconnects between researchers and others organizing clinical trials, and the people (us patients!) whom they want to be involved in those trials. "They're just not speaking the same language," Mike says. Yup, lost in translation... Much work to be done.

Black Box Syndrome

One of my favorite observations from the Summit so far came in the form of a follow-up email from attendee Jim Berkebile, a type 1 since 1984 and Director of Marketing & New Product Development at Tandem Diabetes Care (which just happened to be our Gold Sponsor this year -- no direct link). What Jim essentially points out is something I'm now coining "healthcare black box syndrome": a phenomenon in which patients feel cut off from all the important decision-making touchpoints in health and medicine, because the processes just aren't transparent to us lay-folk.  Jim writes:

I wanted to give you a summary of the conversation that took place around our table during the afternoon session.

I expected to facilitate a discussion around product development engaging the whole person so that the devices that result meet the whole person's needs.  Instead, the conversation took a completely different turn... towards the larger systems that we people with diabetes live in (no doubt that the discussion with the payers influenced this).  What I heard was a gut level reaction of revulsion to any and all black boxes — where information/ideas/questions/concerns/etc. go into a system and are seemingly lost without even the courtesy of acknowledgement.  I suppose that this is human nature 101 — that we'd rather be heard and hear a "no" than sense that we haven't even been heard.

DBMine 2013 Brainstorm

 

black box

Our group focused on  four black boxes:

1.       Industry — "Industry does not listen to us and when we provide insight/feedback.  It goes into a black box that we can't see/understand"

2.       FDA — "we have no real way of providing insight/feedback in a meaningful way to let FDA know how important advances in diabetes technology can be.  It all lands in a black box"

3.       Payer — "we're not really interested in policy decisions or population management black boxes.  We're interested in our claims and Question_mark_bwcan't find anyone to talk to in the payer organization."

4.       Healthcare Provider — "even trying to communicate with our HCP feels like information going into a black box so we have to take matters into our own hands"

 

At the end of the session we were struggling to put a product idea to the insight.  The best we could come up with is that we need the allegorical equivalent of a Tide Stick to remove some of the stain of the black boxes that frustrate us.

I can't help but sense that what you've accomplished in the past several years is essentially the front end of the Tide Stick we were struggling to define.

It was a great conversation — and frankly much more stimulating and enlightening that the conversation we were supposed to have!

 

I couldn't agree more on the synopsis of these four black boxes -- and indeed, these are the issues we've worked to tackle with the Innovation Summit events! The first year we focused on the "mysteries" of industry, then those of FDA last year, and the world of Payers this year. Looks like we have our work cut out for us for next year!

But we're hopeful and pleased to hear from Jim and others that the 2013 Summit "sparked lots of conversations which won't end as conversations, but will move to action and change for the better."

Hear, hear!

  
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This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.