November 14, 2009

Adherence

Diabetes adherence should be how well the tape on the CGM sensor works.


Sadly only people with a CGM see it that way. Amy has a good bit up this week on Adherence and Compliance. My favorite line is: "The term “adherence” made me bristle, too, because it sounds like that dirty word, “compliance.”"

Go read it. I'll still be here when you get back.


Google Scholar has 203,000 articles on diabetes compliance (regular Google has 6 Million) and 129,000 on diabetes adherence. While I’m sure there is a pant load overlap - anyway you shake it that a lot of academic puffery. Either word seeks to collapse all of the management effort required to live with diabetes into a simple little one word solution. OK two if you want adherent compliance. If patients with diabetes would just be compliant everything would be groovy for the medical academics. They make it sound like people with diabetes can’t do one simple thing, comply (or at least adhere if they can't comply!)

The lovely and charming Mrs. YDMV (one of us should be lovely and charming and with me being in the equation that pretty much leaves her to be the lovely and charming that I surely am not) wrote an assignment for a nursing class on of of those quarter million academic papers. That paper was one that got it. It being a word that means idea that compliance isn’t just one thing.

The article pointed out there are one heck of a lot of steps involved with complying. In fact it broke down into minute steps all the stuff that needs to be done to manage diabetes. For example consider a shot. A shot needs to be drawn, based on a calculation of how much insulin is needed. Then hold the vial correctly, push air in equal to the units to be drawn out draw out plus a little more and push back the bubbles and extra. There is proper storage of the insulin, sharps management, logistics to keep the inventories of insulin and supplies on hand so a shot can be draw and on and on…

YDMV readers hold theses truths to be self evident. We live it.

I think there is a lesson in here for us parents too. How much of all that stuff our kid do counts as doing their bit of their diabetes management. What little bit that they don't do constitutes as not doing their share of care? Are they moving in the right direction.

From 35,000 feet diabetes management looks easy. Just comply! It is when your get up close and personal that it becomes a zillion little things.

How about we turn this around. First as parents we need to score as much as possible as doing their share. Remember the long term goal. It is having them move out and be confident that they will care for themselves. This is no different that with a non T1 kid. I know. I have a teenager in college in New York City. There is a certain parental confidence it takes to send a teen of the the Big Apple.


Lets take this turning around of compliance one step a different direction. Hello industry? How about you comply. You adhere to a set of micro steps that work for successful diabetes management. Let start with standards that work to bring all the tools and steps needed to manage a patent’s health into one common non proprietary information system. All meters should speak the same data language, through industry standard connections. Same goes for all you CGM and pump makers.

It our diabetes. Our data. Not your proprietary lever to keep us buying your stuff.

Carey Potash wrote this week about number of the day. Everyday has a host of numbers of the day. As Carey points out what is a good number in their life may not be so awesome to another family managing diabetes. YDMV.

People with Diabetes deal with enough variation. I think it would be great if we could eliminate the counter productive variations between all the tools that collect information families need to manage diabetes. A shot needs to be drawn based on a calculation of how much is needed. Why do we put up with every different pharma or device manager maker inventing new ways to deal with numbers? Hell most need a special $29.95 cable to get the numbers into proprietary software that doesn't do much other than be an accessory to consumable sales.

It is insane. It’s getting worse.

Here is an example: when we got our first pump the lousy software that came with it at least could download a number of different manufacturers’ meters. They tried to comply. The new lousy software only downloads their brand of meters. No need to explain - it says the strip name right on the pump.

I understand. We want to manage diabetes. You want to sell strips. Our interest only partially overlap.

Besides what is a few more steps messing with numbers on the ground as long as the medical journal articles can still talk about compliance from 7 miles away like it is one simple thing?

Up close diabetes management isn't one even on one day. It a lot of discrete steps one day a year and doing them again and again on the other 364.

1 comment:

Kassie said...

and you could apply that adherence concept to the doctors and nurses out there - so many times I've heard different takes on when to test, how often to test, what to do with those numbers, when to call the doc for help. how to handle exercise... great thoughts on the compliance angle!