Can you focus an entire diabetes innovation event on Quality of Life? Yes, you can! In fact, it’s the stuff that builds the foundation for the ever-elusive “improved health outcomes” we’re all after. 

This was the premise behind the sixth annual DiabetesMine Innovation Summit (#dbminesummit16) held on Oct. 28 at UC San Francisco’s Mission Bay biotech campus.

The Summit is a forum that brings together all of the various stakeholders -- informed patient advocates, device designers, pharma marketing and R&D leaders, regulatory experts, clinicians, mobile health experts, tech investors and more -- to explore a new “change theme” each year.

{See the event photos here}

{And event presentations here}

 

Happiness, Habit-Building and the Healthcare Experience

The day opened with a fascinating keynote by Dr. Kyra Bobinet, a Stanford physician behavior designer for health (who studied with behavior guru BJ Fogg), on the topic of “The Quality of Life Connection: Happiness, Habit-Building and the Healthcare Experience.”

We invited Kyra to give this opening talk based on our belief that there are three vital components of “success” for patients:

First - basic well-being and happiness, without which no amount of devices or treatment plans can help.

Second - the overall experience that patients have with the healthcare system, and especially the tools and services they must use for their disease care (addressed in our Challenges Matrix).

Both of which… if positive and productive … allow patients to achieve the Third and vital component, establishing good lifelong Healthy Habits.

Kyra took it to a whole new level with an exploration of the neuroscience behind well-being. She explained her research on the brain synapses involved in good feelings, and the stimuli that seem to prompt these most – and then talked about paths to weaving these components into health tools. Groundbreaking!

We respect her wishes not to publish her slideset, but heartily encourage anyone interested to check out Kyra’s work at her neuroscience behavior design firm engagedIN, and her book, “Well Designed Life: 10 Lessons in Brain Science and Design Thinking for a Mindful, Healthy, and Purposeful Life. “

 

Patient Voices & PWD Needs

Of course we spent some time introducing our 10 fantastic Patient Voices Contest Winners, who joined us on scholarship to represent the PWD community: Randall, Polina, Molly, Sarah, Josef, Jonathan, Kayla, Mariana, Cassie and Sophia.

We asked each of them to provide a Tweet about why they were excited about the Summit, that we could flash on-screen live at the event. Check out those Tweets here.

Then we launched into the meat of the program, nine talks broken into three topic areas: starting with “foundational” QOL innovations; then moving into “Bringing Education and Care to Where Patients Are”; and then capping off with the ubiquitous struggle of “Navigating the Healthcare System” to get what you need as a PWD.

Each 3-talk grouping was followed by a combined Q&A, panel-style, which is always the portion where participants ask the tough questions and get the real heated conversation going. 

Here’s a quick synopsis of each these talks, along with a link to slides for those interested in exploring the details:

 

Group 1: Prioritizing Quality of Life

“Introducing Minimally Disruptive Medicine” - Kasey Boehmer, Mayo Clinic

Kasey is a health services researcher in the Knowledge and Evaluation Research (KER) Unit at Mayo Clinic. She’s a member of the new “Minimally Disruptive Medicine” working group led by Dr. Victor Montori that’s all about “reducing the footprint of healthcare in patients’ lives.” The basic premise is that patients previously branded as “noncompliant” are more likely overwhelmed or just plain burned out. Ya think?

Among other insights, she revealed a telling statistic that a person with a chronic illness who followed the Standards of Care to the letter would need to invest a full two hours per day in his or her healthcare alone, and that’s assuming the mythical person only had one single health issue! This approach is also about the imperative for shared decision-making in healthcare.

See Kasey’s slides here.  

 

“The Behavior Change Effect of Rewards & Incentives” - Jennifer Shine Dyer, MD, EndoGoddess  

Jen is a pediatric endocrinologist, social media enthusiast (@Endogodess), Stanford AP researcher, and app developer/ mobile health entrepreneur in Ohio.

She creates apps with a patient-centered focus, based on BJ Fogg's health behavior model with the following features:  rewards motivation, gaming motivation, multimedia informative diabetes content, social media links, and push notification medication reminders.

Jen talked about how she works a lot with teens, and tested some of her apps on 8-year-old boys, who are “incredibly honest.”

What she’s essentially learned over the years is that offering rewards for health behaviors like BG testing can work well for a short period of time, but that eventually the focus is more on the reward than the behavior itself. What is far more powerful is helping PWDs establish habits – yes habits! – that dictate 40% of what we do each day. She then began exploring the components of habits and learned that some sort of reward is actually part of that equation too.

For more, see Jennifer’s slides here.

 

“Are Patients Really Unmotivated? Strengthening Confidence to Improve Outcomes” - David Sobel, Stanford School of Medicine & Kaiser Permanente

David has a very big background in behavioral medicine and psychosocial factors in health – having written 10 books on related topics. He plays key roles in Stanford Medicine’s Clinical Effectiveness Research Center & the Center for Advanced Study in Behavioral Sciences. He’s worked on the development and evaluation of the Stanford Chronic Disease Self-Management Program. He was also director Patient Education & Health Promotion at Kaiser Permanente Northern CA, and led Kaiser’s national initiative in Patient-Centered Care.

Given all that, it’s probably no surprise that he rocked the house with his dynamic presentation on human nature and how that plays into being a “good” (i.e. compliant) patient.

It’s not that patients aren’t motivated, we’re just overwhelmed. We also need some positive feedback to give us a sense of accomplishment, for God’s sake. And we need to find tips and tricks and reminders that work for our own reality, in our own daily realm – rather than some construct a doctor or tech developer came up with.

He pointed out that when patients don’t meet therapeutic goals, the typical response from physicians is to layer on yet more therapy, thus further increasing the burden, rather than investigating the person’s life enough to understand where barriers might lie.

Such a no-nonsense and meaningful talk!

Totally worth checking out David Sobel’s slides here.

 

Group 2: Taking Education & Care to Where Patients Are

“How Telemedicine Can and Will Transform Healthcare” - Yulun Wang, former head of the American Telemedicine Association

We’ve been hearing about the wonders of “telemedicince” for years. But did you know that lawmakers are finally getting serious about Medicare coverage of this kind of virtual care, having held an important Senate hearing on Telemedicine in April 2015? 

We learned all about it, and about how 1.5 million online patient consultations took place last year, from Yulun Wang, who served as President of the American Telemedicine Association in 2015.

Interestingly, Yulun is one of the country’s premiere experts in medical robotics – he’s even considered the founding father of both surgical and remote-presence robots (!) He’s founder of Santa Barbara-based InTouch Health, which provides technology-enabled services for HCPs to deliver high-quality clinical care virtually anywhere, anytime.

See Yulun’s slides here.

 

“Harnessing YouTube and Facebook to ‘Bring the Real’ in Diabetes Education” - Ansley Dalbo, Diabetes What to Know  

A fantastic grassroots approach to bringing diabetes education to where patients are! That’s how we see Diabetes What to Know, the website launched by Ansley Dalbo and her husband that offers newly diagnosed T2 patients and their families bold engaging videos that teach all about the basics of diabetes. The program also leverages email, Facebook and YouTube to engage D-peeps in disease education, completely cost-free from wherever they are!  Ansley Dalbo diabetes

We also love her “ship and iterate” crowdsourcing approach, meaning they keep tweaking and improving on the video offerings based on user feedback.

btw, Ansley’s a Harvard grad, who worked in the D-industry for 13 years, including 11 years consulting with Walmart Pharmacy building their private label brand, ReliOn. 

She now primarily works with diabetes companies on strategic planning, new product launches into the retail pharmacy space, brand enhancement and expansion efforts. So she really knows her stuff.

See Ansley’s slides here.

 

“Comprehensive Coaching: Improving D-Health and Quality Measures” - David Weingard, Fit4D  

Many of you will recognize David Weingard as the software exec / runner and triathlon athlete who was diagnosed with T1D at age 36, while training for a survival race.

He got inspired to rebuild his life around providing positive forces for the D-community, and in 2008, left Microsoft and his career in IT to found Fit4D, which started out as exercise coaching … It has now morphed into an extremely successful comprehensive coaching program for people with type 1 and type 2 diabetes. Seriously, he’s built an empire.

Fit4D has grown into a technology platform with intelligent scripting algorithms that enable CDEs to increase capacity 5x to deliver personalized diabetes care via multiple communication methods. In August, the New York-based company announced they’re now the largest employer of CDEs (certified diabetes educators) in the United States (!)

How did he manage to scale this “comprehensive coaching” program to help patients, employers and healthcare providers? David enlightened us about how they managed to marry the human touch with technology for success.

See David Weingard’s slides here.

 

Group 3: Navigating the System: Access & Coverage

“Moving Beyond A1C: FDA, Industry and Patients Weigh In” - Anna McCollister-Slipp, Data Entrepreneur & Patient Advocate

D-peep and DC-based advocate and entrepreneur Anna McCollister-Slipp kicked off her talk with: “You can’t swing a dead cat in Washington right now without hitting someone who’s holding a meeting about patient-centered outcomes.”

But lost in the emphasis on outcomes, she feels, is life quality. Most of the current health measures are numbers. Cold. Hard. Fixed… not providing any insight into patient well-being. And certainly not addressing the day-today challenges of diabetes, like the hypoglycemic event that Anna was actually experiencing live during her talk! We’re so proud how she pulled herself together, and thankful for Ben West and others who lept forward with glucose products to help Anna. Anna McCollister Slipp diabetes

To address this lack of meaningful outcomes measures – important too because they’re used to determine which products get insurance coverage – Anna continues work on the VitalCrowd project launched at last year’s Summit, which is a platform to cull patient input on research design.

She’s also played a key role in FDA’s recent efforts to look beyond just A1C lab results when considering new diabetes treatments for approval. Anna was involved in the FDA public workshop held on this topic in Washington DC at the end of August.

In her talk, she compared using changes in A1C to measure the effectiveness of a diabetes medication to using the historic Farmer’s Almanac to check today’s weather – makes no sense!

Long-term, she challenged innovators to develop ways to quantify variability and velocity of glucose changes, and in the short-term, she’s spearheading a project to link Dexcom CGM data to simple emoticon-based reports to provide scientific evidence for what many of us already know: Rapid changes in glucose have an immediate impact on our bodies, and our well-being.

She’s looking for collaborators in this new “Beyond A1c” study. See Anna’s slides here.

 

“Value-Based Care & Patient Engagement: Progress and Interplay” - Josh Seidman, Avalere Health

When we were looking for someone to explain the implications of “Value-Based Care” and healthcare reform, Josh was an obvious pick. He’s Senior VP one of the country’s most respected healthcare consulting firms, Avalere Health, and also former Director of Meaningful Use at HHS and past President of the Society for Participatory Medicine.

At Avalere, advises clients on health delivery and payment innovation with a focus on using IT to guide value-based care models.

Not sure what that all means? Neither were we; that’s why we were so privileged to have him!

Josh shed some light on the shift from “fee for service” to a new “value-based” model in healthcare, and actually gave us some hope that this could indeed lead to better diabetes care and coverage (Trump presidency policy questions not withstanding). Best of all, he believes that the new Medicare payment system is creating incentives for improved diabetes management.

Also, Avalere is developing something called the Patient-Perspective Value Framework (PPVF) to better assess therapies, diagnostics, and other healthcare services in line with patients’ conceptions of value (italics added by us). Worth checking out!

See Josh’s slides here.

 

“Building Consumer Pressure for Sensible Health Coverage” - Brenda Hunter, Founder of No Small Voice

Brenda Hunter is a very empowered lady. She has a degree in chemical engineering and spent the last 16 years at HP leading a global team focused on reporting and analytics.  She’s also the proud mother of five daughters ranging from High School to a recent pre-school graduate (hats off!)

Diabetes came into her life two years ago when her middle daughter Malia was diagnosed with T1D. Her family dove headlong into the world of insulin pumping, CGM, carb counting etc. But they were most shocked to learn of the utter lack of information and help available concerning insurance struggles.

During the six-month approval process for her daughter’s pump, Brenda began formulizing a plan… She’s now developing a platform called No Small Voice, to help make the process more transparent and accessible to patients, and to gather fuel to lobby decision-makers on insurance matters. In particular, Brenda wants to be able to show employers hard evidence that these insurance woes are eating away at productivity, and therefore they (employers) should demand an improved coverage model.  Essentially Brenda is building consumer pressure for sensible health coverage – which we think is a laudable goal!

To wit, some folks have remarked that No Small Voice is still in nascent stages, and that Brenda – as a newbie to the T1D scene – sounded a little too “entitled” as she complained bitterly about not getting the ideal pump for her daughter right away.

Our response to that is twofold: 1) this event is about innovation, so we always like to sprinkle in a few items that are still in the early “bright ideas” stages, and 2) sometimes it takes a newbie with a fresh perspective to most clearly identify where change is needed. Brenda has the background and drive to shake things up, and her notion of lobbying employers may indeed have more impact than all the yelling at lawmakers our community is doing right now.   

See Brenda’s slides here.

 

Changing Perspectives Pairings 

For our interactive session, we had participants pair up with someone in a different stakeholder group (patient, pharma, clinician, designer, etc.) and interview them, taking notes on 3 things they may not know about each others’ work or their connection to / experience with diabetes. They were then encouraged to Tweet some of what they learned, or ideas sparked, at hashtag #DBMineSummit16.

From my POV, two eye-opening things happened here. First, we discovered that lots of our attendees were not already active on Twitter (what?!) We got Dr. William Polonsky set up!

But OK, so we had some live report-backs on what people discussed – and that’s when the second big thing emerged, IMHO.  Many of us were quite surprised to see Vincent Crabtree, JDRF’s Director of Device Technology, stand up and express his bewilderment that most PWDs in the room don’t expect to see a cure in their lifetime. Wow… seems common sense to me, even if you’re only in your 20s currently. It’s not like we’re all sitting around holding our breaths for the cure… We’d love it of course, but are practical to know that it will takes decades yet, or longer.

Which explains the focus on Quality of Life Innovations at this event, yes??

 

Unveiling Our DiabetesMine Challenges Matrix - Patient Community Research

Remember that “scorecard” for the diabetes tools and services that we debuted last fall called DiabetesMine Challenges Matrix Reportthe DiabetesMine Challenges Matrix? It’s a new way of mapping the diabetes care landscape with a focus on the needs of people with diabetes (PWDs) and their caregivers.

Well, thank you to everyone who weighed in on our big community research project on that last Spring!

At the Summit, we unveiled the results, and also a downloadable version of the full report that came out of that community survey.

Click here to read more about it.

Click here to download the DiabetesMine Matrix Report »

Big thanks to the PV Winners who sat on our Patient Reactor Panel - Molly Schreiber, Sarah Mart and Randall Barker – and shared their personal insights about tools that help them most.

 

 

The 2016 DiabetesMine 2016 Usability Innovation Awards

Based on that community survey, we selected the three winners of our 2016 DiabetesMine Usability Innovation Awards – that honor the tools the patient community deems most helpful.   

Please see this post for all the details on selection and winners.

Click here for my presentation on the Challenges Matrix Research and Usability Awards Winners !

 

 

Event Kudos

We capped the day with our traditional Wine, Cheese & Jazz! Networking reception.

We don’t always do this, but while we’re so focused on community input… wanted to share just a bit of participant feedback from the 2016 DiabetesMine Innovation Summit:

"I loved that Dr. Bobinet’s excellent keynote was not diabetes-related, but could so easily connect to diabetes. I also loved the level playing field of the room. Once again, the best networking Summit in our industry hands-down."

“I was very pleased that much of the talk was focused on patient experience versus traditional outputs and outcomes and it was a relief to get confirmation that the paradigm is shifting in practice."

"I think there would be value to have the Patient Voices Winners talk more in the meeting."  (Note taken!)

"David Sobel in particular was superb -- he understands behavior change. "

“I love hearing about the future of telemedicine and new ways for our community to use technology to get and stay healthy. More! More!"

2016 DiabeteMine Innovation Summit

 

Thank you one and all, for participating!

 

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

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.