Thursday, July 26, 2007

Of Independence and Angry Mobs

When in the course of human events at the CDW Friends For Life Conference I was in a discussion about data and how to get it to the care team people who needed it. The moderator asked about care teams and who were the key players we rely on to care for diabetes, specifically the endo, the CDE etc..

So everyone around the room was talking about how often they have a doctor visit and how much time was spent with the Dr. verses the nurse at a visit and so on. Folks talked about doctors they love and other told horror stories of doctors they bailed out on.

After a while of this the guy next to me, Mark, said something so brilliant it stopped me cold. He said, and this is a close as I can get to a quote;

‘My wife and I are our daughter’s primary care team.”

Doing!

That may have been the single best sentence of the week. I would say we hold these truths to be self evident but it obviously wasn’t evident to anyone else in the room until he said it. Then there was unanimous support for the idea.

Now I must be an idiot. (OK I know many of you are likely to have come to this conclusion yourself.) Our doctor has been making this point to us for years. He has no interest in us printing out charts and data just for him to see. Now if we use software to help us manage the care we give our kid and we want to work through an issue with him, he is more than happy to have a look at some printouts.

The next day at the CWD conference in one of the CGM meeting we were directed into talking about how CGM data could be sprung free from the little receiver and shot out to other devices and or members of the team. Specifically we were instructed to talk about how we would feel about it if the doctor could get be alerted to the data in near real time.

So off we go about getting information to the doctor. The device makers were read hot on getting data to the doctor, like doctors around the nation are sitting in the office with nothing to do but wait for the red phone to ring or something. That must be the way to getting stuff sold and or paid for, “get the doctor the data.”

Well in this second session, we the people staged a little uprising and were insisting we needed the data ‘cause we are the care givers when the manufacturer’s rep said something along the lines of, ‘Well, you know, only the doctor can make a change in therapy…”

This was followed by laughs and shouts to the contrary from the crowd. I did a healthy business in selling pitchforks, torches and other angry mob supplies.

The same doctor centered imagery was prominent in the displays around display booths in the trade show. Concerned looking older male models dressed as doctors pointing at some point on a graph on a computer screen so some younger female model could pose as a mom in a admiring nod while the picture was take.

So here is a problem. The gadget manufacturers don’t get the big idea that families are the primary care givers. I guess they can be forgiven if only one in twenty of us has the presence of mind to say the family is the primary care team in a focus group meeting.

We all need to get a grip! Software, IF it is going to be used in T1 households, is going to be used by primary care givers mom and dad or by the T1 patients themselves.

Before we got our first diabetic kid out of Children’s Hospital at age 9 Children’s was talking to us about looking to independence. Our goal was to raise a kid to independently manage his (then her when the second dx happened) own diabetes.

Someplace along that path to independence has to be for families to manage the freaking condition without an umbilical cord back to the doctor’s office. Yeah the doctor knows how to manage diabetes, our job was to learn it and teach it without that care becoming a teenage rebellion issue. (Sounds easy enough right?)

So all you manufacturers out there, make tools that support independence. Tying us tighter to a doctor electronically isn’t the goal. It is the opposite of the goal.

Independence is the goal.

1 comment:

Sharon said...

Hi,

7.9% of the United States population is suffering from a form of Diabetes. That is over 23 million people! Now, more than ever, it is important for organizations such as yourself. We here, at Disease.com (a site dedicated towards disease and their treatments), believe in the work you do and would like to coincide for the fight against diabetes. If you could, please list us as a resource or host our social book mark button, it would be much appreciated. Separately, we can make advancements, but together we can find a cure.
If you need more information please email me back with the subject line as your URL.

Thank You,
Sharon Vegoe
Disease.com