To my mind, the DiabetesMine Innovation Summit I've hosted the last two years is not a "conference." Rather, in the true tradition of a "Summit," it aims to bring key decision-makers and other folks passionate about diabetes care together in one room for some very frank conversations about where we are now, what needs improvement, and how we can get to a better place as quickly as possible.
On that note, the Pharma executives and FDA and ADA officers present at this year's event — held Friday, Nov. 16 at Stanford University in Palo Alto, CA — certainly got an earful from patient advocates! One of my colleagues from Alliance Health Networks called the event "a focus group on steroids."
This year's event was less of a design workshop (how to make products that patients actually want and need) and more about breaking the "gridlock" in the diabetes industry: Why does every diabetes tech product have its own clunky cables and not share data with other products?! Why aren't companies working together to form standards for this stuff, that would also ease the FDA approval process?
Some of the "Powers That Be" folks in the room this year included the CEO of the American Diabetes Association Larry Hausner, as well as ADA's new Chief Medical Officer Dr. Robert Ratner; Joslin Diabetes Center CEO John Brooks III; endo and educator extraordinaire Dr. Steven Edelman; legendary researcher Dr. Bruce Buckingham (he crashed the party!); Horst Merckle of Roche Diabetes and the data-standards initiative Continua Alliance; Yogen Dalal, co-founder of Glooko; Patti Brennan, National Director of the Robert Wood Johnson Foundation Project Health Design and many more. About 105 people in all.
Companies represented at the Summit included: Sanofi Diabetes, JnJ LifeScan, JnJ Animas, Dexcom, Abbott Diabetes Care, Bayer, BD Medical, Eli Lilly, Insulet, Medtronic Diabetes, Roche Diabetes, AgaMatrix, Glooko, Enject, Dance Pharmaceuticals, Hygieia Inc., Omada Health, Misfit Wearables, Valeritas, VeraLight and Target Pharmacies. (Tandem's CEO and the CEO of WellDoc both unfortunately had to opt out at the last minute.)
In addition to debuting our Patients Call for Innovation video, this year's agenda included the following:
- The DiabetesMine Design Challenge Story & Evolution of Online Patient Advocacy
opening remarks by me
- The Future of Open Models for Diabetes Care
Dr. Iklhaq Sidhu, Chief Scientist, Fung Institute for Engineering Leadership, and Director, Center for Entrepreneurship & Technology at U.C. Berkeley
(with insights from CloseConcerns)
- Diabetes Collaborations to Date & Obstacles That Remain
Linda Johnson, JDRF Director, Partnering & Alliance Management
- FDA Perspective: How Different Constituencies Can Work Together Better
- Interactive Panel 1: Device & Data Interoperability
Moderator - Anna McCollister-Slipp, FDA patient representative and co-founder of Galileo Analytics
- Interactive Panel 2: Breaking Out of the Clinical Silo into Lifestyle Thinking
Moderator — Gabe Kleinman, IDEO design
- Patient Reactions...
from Patient Voices Contest winner Jana Beck & D-dad blogger Bennet Dunlap
- Taking a Systems Approach to Improving Life with Diabetes: What Does it Take?
Activity led by Dave Weissburg of IDEO design
If you're curious, we have just posted the slidesets from the event here: http://www.slideshare.net/
Some of the highlights were Dr. Sidhu, making the analogy between the diabetes industry and the computer technology industry. His key messages were:
What can we learn from the IT industry?
- Customers want open standards. It will happen.
- It only takes one player.
- Change is irreversible once it happens.
... and Dr. Alberto Gutierrez of FDA, who was at once apologetic for the slow pace of evaluations, while also pushing back on "scapegoating" of the agency by device manufacturers. In truth, the approval process for new software requires only a 15-day review, he said. All three of the FDA representatives on hand — Guteirrez, Stayce Beck and Arleen Pinkos — were exceptionally open and candid with the group, which was much appreciated and is hopefully a harbinger of better relationships and faster approval processes going forward.
Two of our patient reps at the Summit already published great blog posts summarizing their takes. Please see:
Bennet Dunlap of YDMV on "Batman, Super Heroes and the DiabetesMine Innovation Summit"
Doug Kanter of Becoming Diabetic on "The DiabetesMine Innovation Summit"
I also asked a handful of additional DOC activists and our Patient Voices Contest winners (all of whom attended the Summit on scholarship) to send me a few paragraphs of their own reactions. Here is a selection of choice quotes from the feedback received:
"I consider myself extremely lucky to attend the 2nd annual DiabetesMine Innovation Summit. I got valuable insight into: the challenges of diabetes data sharing and work completed to better enable this; I also was fortunate to hear someone from the FDA talk about the difference between devices and drug approvals and how the FDA was working hard to gather expertise that will make future device approval much easier. We all hear so many rumors, positive and negative, about the FDA. Talking with some FDA people after the event made it clear to me that these are hard-working, intelligent, committed folks, doing their very best to get use the safe and effective technology that we need.
"The afternoon panels clearly showed how the same challenges are viewed across the diabetes spectrum from patients, doctors, and industry. Listening to their opinions and being able to offer suggestions and questions was invaluable. The design firm IDEO led an amazing product brainstorming session where the entire Summit agreed on top three priorities; identified stakeholders involved in solving them; and provided a large set of ideas that might be part of the solution. Whew -- this session alone made the Summit invaluable.
"I wish continued success to this meeting in future years. It's a unique opportunity to combine talents, expertise and stakeholders in one room so we can listen to and hear one another."
"It is always really encouraging to be in a room full of people smarter than me, especially so when they are all talking about ways to improve my disease care.
"I found the voice of the FDA representatives especially interesting to hear, as they were able to both admit fault and deflect some of the blame that is repeatedly put on their shoulders by the companies we all know and hear all the time. I was encouraged to see the progress of many of the device manufacturers in terms of data analysis and representation, but also realized that, given the inertia and reticence of the organizations in question, the best short-term solution will have to come from the community -- those of us who are willing to put in time and effort because we care, and therefore will not be bogged down by the oversight that comes with trying to charge money for devices and software in the medical technology space.
"In that sense, the most valuable part for me has been that it encouraged me to stop waiting and get to coding, so that I can at least get the multi-device graphs that I care about for myself."
"I see my endocrinologist, maybe 4 times a year; what exactly does the data on that one day tell me? I can get tips at the margin, whatever... but what we need is something that integrates our data in a format that we can form our own understanding and make our own decisions." - leader of the first patient panel
"Data is useless unless you can analyze it; as a clinician with diabetes data it's all about how it is presented, how it's displayed. iBGstar is a great example. I've gotten teenagers to test and log their data because of the great interface. But when they bring it in, the data is useless and this is the reason clinics ask their patients to use logbooks. Because a lot of the software that is out there just doesn't present the data in a friendly way." - one of the clinicians present
"A patient, long before he becomes the subject of medical scrutiny, is, at first, simply a storyteller, a narrator of suffering -- a traveler who has visited the kind of of the ill. To relieve an illness, one must begin, then, by unburdening it's story" - Emperor of All Maladies
"For me, the most surprising thing about the Summit was the degree to which I felt that the day ended with a real feeling of consensus. To me it felt like everyone in the room - patients, HCPs, industry representatives, and the representatives from the FDA - were agreed on the fact that diabetes technology is in need of much improvement, and that that improvement needs to happen at a greater speed than it has been in the last few years.
"It was also encouraging to see how much the patient experience and patient needs really do drive the diabetes technology industry (or at least the companies represented at the Summit). I was particularly impressed with the non-PWD Dexcom representatives wearing G4 systems themselves (although I regret forgetting to ask if they tried to keep their sensors on for seven days and if so, how?) and the story about AgaMatrix sending cameras home with some patients so that they could learn more about how the patients fit diabetes in with their day-to-day lives."
"I LOVED having in the same room patients, surrounded by decision makers from industry and, perhaps as important (if not more), seeing FDA represented by Dr. Alberto Gutierrez and two people from his team. Not only was it valuable to hear them, but also hearing Dr. Buckingham and someone from Dexcom R&D give Dr. Gutierrez props over the 180-degree shift in terms of response times from his office. As a patient, this was a very welcome piece of information and a source of great hope for the future of technology for diabetes patients in the U.S. (and worldwide).
"I definitely missed having the payer sector represented in the event. I heard how insurance companies and Medicare hold so much of the power underlying the success of just about any initiative to benefit people living with diabetes, so they need to participate in these summits: hearing the voices of patients, industry, and regulatory bodies. Today, our voices may be a bit dampened by the fact that employers are a bigger percentage of the business of insurance companies, but with the broader adoption of the Affordable Care Act, patients are going to have a bigger voice and will exercise their right to speak up for what they want in the form of care. It only follows that payers be present at a forum like the DiabetesMine Innovation Summit moving forward."
Excellent points all, and thank you to EVERYONE who participated for the hard work you do all year round towards the common goal of making life with diabetes BETTER.