I had the privilege of joining with a number of industry, patient and regulatory participants at the Diabetes Mine Innovation Summit in Palo Alto last week. By number of participants, I mean a hundred or more. Our focus was the low percentage of diabetes patients who download information from their devices, the lack of interoperability of that data and how living with diabetes could be improved by addressing both.
Patient voices shared in video express the reason for the gathering clearly:
Linda Johnson of JDRF outlined some of the research initiatives they are funding. Alberto Guiterriez of the FDA shared a presentation on how they have made changes and are working more collaboratively with constituencies. Bruce Buckingham rose to share his experience that the agency has been successful in that transformation. He was joined by members of the Dexcom team who reinforced the FDA message of collaborative effort. These presentations set the stage for the conversations of innovations that can come to people with diabetes more rapidly and from a diversity of sources.
Patients are one of those source. If you haven’t seen Jana Beck’s presentation to the at the NY Quantified Self meetings have a look. Her work is an outstanding example of how data can be collected and used. I sought out this video after conversations with her at the summit.
I had the privilege of providing a closing patient's response to the day’s presentations and panel discussions. I am not sure what I actually said but this is a rough approximation based on my notes:
Hello. I am Bennet Dunlap I have type two diabetes and two teens who have lived with type one for 8 and 9 years respectively. This morning Steve from TCOYD asked if I was a patient and I instinctively said, No. He encouraged me to take cafe of my diabetes. I think in reflection I said no, as a function of the intensity of effort required for my care verses my kids. Raise you hand if you have any experience with the intensity of teenage attitude.
I manage my diabetes with a plate half covered with greens and a new puppy that needs a lot of walks. My kids test, correct, carb count and infuse all day, every day. I am not an endocrinologist or general practitioner but my wife and I are primary care givers. We manage care in the 8,700 plus hours a year that they are not with a physician.
The summit participants had a great conversation about the 90% of patients who don’t download data. Steve said that part of that was the B.S. spaghetti bowl of wires and cables needed. (I had a sign for that.)
I feel compelled to touch base on a different 90%. Diabetes care, some say is 90% emotional and 10% or technical. In one panel discussion one of the Saras talked about her emotional responses to service, to the lift she gets form someone knowing she is a name not a number. That is one of a myriad of examples.
As a parent and a 8,700 hour a year, times two kids, primary care giver I want information to help me interact with our teens and I want it to help minimize attitude opportunities. Let me give you an example of how that can work. The good folks at Medtronic gave me a trial run on mySentry. That is a small screen that connects signals from the pump on my daughters belt to a bat-signal amplifier that beams the signal to the bat-cave screen downstairs. Somehow in all this I became Alfred the butler. I intentionally used all this batman language to move talk of the devices from seriously solemn to silly and so approachable.
I could look at that bat-screen and choose times of good bg to interact. To go to my daughter and say, “Hey good work look at this graph. What ever you did was great! What was it?” The technology facilitated non attitude producing, positive feedback to help the 90% of diabetes care that is emotional. That is the sweet spot.
Here is another example. Last week I had the opportunity to give a patient comment the FDA panel considering a new basal insulin. That process seemed detached from the reality of hypos. A representative of the Endocrine Society stood up and spoke about hypos and patient fear. Fear. There is a real diabetes emotion. He said that some patients intentionally run high blood sugars and poorer control out of fear of lows. For parents the fear is often focused nocturnal hypos because they kill a kids, every few weeks. The sad news spreads through social media, reinforcing the fear. This fear is a part of the emotions of diabetes care where a where technical innovation such as low glucose suspend and artificial pancreas that JDRF and the FDA spoke can start to help. Information technology super heroes are needed to make them.
This morning the point was made that to improve the use of data, the process has to be made fun. I would maybe say rewarding is close enough to fun. Not fun as in a game. Not points adding up to gift cards, not commerce but emotionally rewarding. This group can create the means of connecting to patients to peers to make sure each success, no matter how small, has a chance to shine. I suggest that is where the reward can be found.
People with diabetes are their own primary care givers. Peer to peer patient support can the reward that drives behavior 8,700 hours a year. If the group at the Diabetes Mine Summit can create tools to make those connections simple, peers will make them rewarding.
If you do, you are Super Heroes in my eyes.