Data is not knowledge
While the fallout from Johnson and Johnson (NYSE: JNJ) decision to shut down Animas continues to reverberate through the insulin pump community the rest of the diabetes world marches on. A march that is increasingly becoming data intensive. Yes, you can’t swing that proverbial dead cat without hitting this obsession with data. An obsession that has only become more intense after the FreeStyle Libre was approved by the FDA.
Although we have known for some time that CGM would replace BGM as the standard for glucose measurement it seems now that Libre has been approved the rest of the world has finally awoken to this fact. In many respects we find this somewhat laughable but then again nothing surprises us anymore.
As so often happens in our wacky world everyone becomes fascinated by the toys patients use rather than how they play with these toys. Many just assume that since these toys are available that patients will play with them and better outcomes will happen as a result. The reality is it’s much more fun and exciting to talk about cool new toys like an artificial pancreas than to admit that even with all these new way cool whiz bang toys for most patients nothing has changed. That we still live in a world when nearly two thirds of all patients are not under what is defined as good control.
Given this obsession with data and interconnected diabetes management (IDM) we suspect that once again everyone will miss the forest for the trees. The main problem as we see it is that the collection of data does not necessarily lead to better outcomes. Even when analytics is applied to this data it does in and of itself guarantee anything. Data by itself is a retrospective look at what happened, not a prospective look at what could happen.
For data to be useful it first must be transformed into a language a patient understands. As we state all the time data must be transformed into patient relevant, patient actionable information. Without this all data does is help make pretty charts and graphs that no one pays any attention to. Data does not give the patient the want to or the how to. Data provides no motivation or incentive for the patient to do all the heavy lifting good diabetes management requires. Patients cannot touch or feel data.
Now we hate to dumb things down but sometimes we must. Think of it this way when a patient is overweight this is something they can see and feel. Each time they look in the mirror or step on a scale they know that have a weight issue. Once motivated to do something about their weight the patient gets lots of positive reinforcement from family, friends and co-workers people who are telling them “Hey you look great keep it up.”
Diabetes is not like that even when the patient has access to all the pretty charts and colorful graphs. They do not wake up look in the mirror and say heck my diabetes isn’t where it should be I need to do something about this. They receive no positive reinforcement from the people around them that keeps them motivated to do all this work.
It’s time everyone acknowledges that yes there is a subset of patients, mostly insulin users, who understand how to transform data into action. But this is the minority for most patients they lack the time, knowledge and motivation to do this. We’ll say it again these people live their lives with their diabetes and not for their diabetes. They have chronic disease which they do not want, do not understand which requires work to manage properly and worse of all receive nothing tangible in return for their efforts.
The problem is the diabetes folk hold onto to this myth that most patients feel the same way as the minority of patients. They believe that non-intensively managed patients care about the same things intensively managed patients care about. This is like believing every person who participates in a marathon wants to be an elite runner when the truth is for many participants, most actually, all they want to do is finish the race.
Yes, the collection and analysis of data has the potential to be game changing but the fact is that’s all it is, potential. Data is not knowledge, it provides no incentive, no motivation and does not make managing diabetes any easier and a strong argument can be made that it increases not decreases the workload for the patient. But in the end, it’s so much easier to look at pretty charts and colorful graphs than to acknowledge or fix the real more complex problem.
We’ll say it once again you can give these patients the how to but until someone figures out how to give them the want to, how to motivate them, reward them and how to make their diabetes management matter to them, make it personal we are just kidding ourselves. In the end Harry the hamster continues to run on that wheel to nowhere.