People perform better when we’re informed better

Well, in the book, one of the things I said was “people perform better when they’re informed better.” It applies to you, you can’t take effective action on anything in your life if you don’t have the information and it applies to all of us. And there is a strange thing in medicine. For a long time, the only people who can do anything useful in medicine were physicians and they got the idea, or at least that’s what they thought, what all of us thought for a long time. Well it gave them the idea that there was no point giving information to patients and families. Today we see that that’s very, very different.

And that brings us to the question of “where does useful information come from?” It used to all come from the doctors, the medical schools, and so on… And that gave us this kind of world where every patient was like a child who was given whatever treatments they needed with no thought and sometimes not having any idea what was happening. Well today the world is quite different. This is a device, a smart phone case. I have one myself, I don’t need it personally but I have it just to show to people when I speak at conferences. This is an EKG, some people call it ECG and it’s just something that is attached to the foam just to hold it in place.

The device itself actually doesn’t have to be attached to the phone and here’s why this is important. Cardiac patients who have an arrhythmia, very often, it won’t happen while they’re in the doctor’s office, hooked up to EKG machine. And so it’s very hard, it’s sort of like fishing except you can’t see where any fish were and then one jumps out of the water, but the doctor isn’t there to see it. Well now you put your fingers on this and turn it over, and the app…if you’re having an Arrhythmia, the app will capture it. And if it’s normal, it’ll say this is normal and if it’s not, it’ll say “Do you want me to send this to your doctor?”

So now notice useful information can live in the home and it doesn’t just help the patient, it helps the doctor. Why it helps because the doctor can now see information on the screen of what happened. So it enables everyone working together better. My friend, Hugo Campos says the most famous patient in the world who has one of these, he has an implanted defibrillator wired into his heart because he has a very bad heart condition. He would like to see, on this phone, what’s happening in my heart. But the device maker, Medtronic, has said “No! It’s none of your business that information belongs to the doctor.”

Well now Hugo has this, it’s not the same as what he wants from Medtronic, but it…he is much, much better now. I mean look how happy he is. This is a slightly different model from when the product was brand new because he was one of the first people to get one. He has a cardiac condition that could kill him at any moment and he really wants to be involved in managing his care and this helps him do this. New things are possible. With a different disease, diabetes, there is an amazing thing happening called OpenAPS. You can search for this hashtag on twitter or anywhere. It’s the…there’s also OpenAPS.org. It’s the open source, artificial pancreas system.

And what some of these people, led by Dana M. Louis She’s the most famous user and another, a friend, Ben West. What they have done is the hacked into their devices, CGM-Continuous Glucose Monitor and insulin pump. They got the data out of them, and wrote a little bit of software that they now run on a cheap pocket computer called…and all of this is right here in these picture. Pocket computer called The Raspberry PI or I guess they also use one called the Intel Edison. And it works! Dana’s insulin now is better controlled than when she had to do all the arithmetic in her head.

You can read more about it on their website, just go ahead and google like any E-patient does and they are working with the FDA 【The Food and Drug Administration】 they’re not going to sell this as a product. It’s open source software. So they don’t need FDA approval. But consider that in May, two months before I’m recording this, at a conference in San Diego, Dana brought up eight other users of this software on stage and they talked about what it’s like to be managing their own insulin, their own blood sugar through this software. In fact, one of them is, may have mentioned, imagine being the parent of a baby who has type I diabetes. And any particular night they might die.

The baby might die, if the glucose gets out of control. It’s continuously managed now for one of these families. And the most wonderful thing I heard at this conference presentation was several people said that they sleep better now knowing that there’s less chance that they are going to die unexpectedly overnight. The world is different, the future is different. Today is different than it used to be. Now they’re very clear, rigorously scientific about this. This is not a mass market product. They say this is n of 1, not a large controlled medical trial, but they say it was n of 1 times 59 because there were 59 people doing it.

And in fact on June 3rd at the white house in Washington D.C. where this was discussed, in a precision medicine conference with president Obama there. There were up to 75. And as of yesterday, in late July, I checked again and now they have 101 people who are doing this. In fact, here are Dana and her husband, Scott, who wrote the software and actually it’s funny. He said she wrote the software because she said what she wanted it to do and he just wrote the code. And in the background there at the white house is Hugo Kampos, The man with the Alive Cor, and the implanted defibrillator. So this is very much recognized now as something real that’s happening.