Sunday, September 9, 2007

I'm Mad!! Minimed Carelink Software has a Gaping Hole

Just to put this up front--I'm MAD!

Minimed offers Carelink Personal Therapy Management Software, a Web-based system designed to help you take information from all of your diabetes management tools – your insulin pump, continuous glucose monitor, blood glucose meter(s), and logbook – and organize it into easy-to-read charts, graphs and tables. It offers a logbook as well, which is "intended to assist you in analyzing impacts to your glucose control based on delivered Bolus insulin and external events documented in the Logbook."

PROBLEM--The Logbook only offers five "external event" options for documenting what is happening with your diabetes care:

Carbs
Exercise
HbA1C
Infusion Set Change
Urine Ketones

There is no place in this "therapy management software" to make general comments about your health or wellness, like when I have the stomach flu, a major deadline at work and I am stressed to the point of exploding or a sinus infection. My menstrual cycles causes HAVOC on my blood sugars from the day I ovulate through PMS and to the end of my period.

These are not random notes; frivolous nuggets of information. This information is about MY LIFE and every move I make impacts my diabetes control. My doctor, when he reads the files I saved from Carelink, has to know the facts when making recommendations about bolus/basal changes. If he doesn't see what is going on, it looks like I am just randomly out of control.

The very thing that makes the CGM so miraculous is that we get hard numbers 24/7. Numbers are virtually meaningless if you don't know what is happening to my body causing the blood sugar changes.

My doctor will get two weeks worth of reading through the Carelink and the first five days are relatively stable; it shows some lows, but there are notes related to exercise, so that makes sense. There was one super high with a note about an infusion set change, so that makes sense.

Then, day six shows blood sugars hovering between 150 to 200. No notes (after all this isn't related to the five logbook entries provided). Two days later they are high--over 200 all the time. A temp basal is employed, but again no notes.

I'm 250 at bed time on Day 12 and then Day 13 shows a huge drop in sugars; now below 70 all morning and not much higher after lunch. Day 14 is stable again--80-140 most the day.

What is a doctor supposed to do with this if he doesn't know I'm sick or have my period or had a bad batch of insulin or had a tough work week. There is no treatment recommendation that would make sense.

So, my point--I'm mad that the medical companies spend so much energy developing technology that can serve us SO well, but they forget about who is using it or what we have to do to manage the disease they are helping us treat. Who would release software that doesn't allow a user to make general notes. It is absoutely ridiculous!

October 3, 2007 Update

I e-mailed Minimed the night I wrote this post and I have not received a follow up beyond the message that my comments were being forwarded to the Marketing Dept. I sent them another message this morning requesting a response.



11 comments:

nicole said...

Ugh, I so get what you are saying :-( I have a love hate relationship with the Carelink program right now. Why oh why can't they make it mreo user friendly! I don't even bother using the 5 they have, I just wait for the Endo to call........

Bernard said...

Amen Wendy

I've been working on describing data formats for diabetes information and I suddenly realized that all of the various programs I've used (except for SugarStats.com) has this problem. And without comments how are you going to remember why you had a particular low in June 2007?

I'd actually like to see two types of comments. One for a specific date and time, and one that can be marked for a time period. Like 'I was at the gym from 1 PM to 2:30 PM'.

Lets hope some of the software people figure this out. I need to rant about it on my blog!

Mystique said...

I have the 722 pump but my insurance doesn't cover the CGM yet. I have been putting comments into the exercise heading, about being sick and PMS and stress.
I hate the fact that my insurance doesn't cover the BD monitor so I have to use a different one and you can't enter blood glucose reading manually. I ask the help desk why and they say it is out dated due to the research grants form the government. The government didn't want any false reading in the studies.

Nicole and Mon Voyage said...

Good point. We are trying to remeber all the time..."but that night you drank a lot of wine with dinner" or "your allergies were bad that day" or "we crossed 11 time zones" or whatever.

We tried the DexCom CGM in late 2006 and it was a total piece of crap, inaccurate readings, incorrect alarms missing both highs and lows and alarming when there's no issue, terrible employees who don't know what they are talking about, misleading literature and sales pitch, a complete ripoff.

We are now looking at the MiniMed lately...but my husband is very partial to his Freestyle meter (so fast, so accurate, such a tiny drop of blood) and his Animas pump (pumping well since Dec 2000), so we are tempted to wait for either the Navigator or the J & J/Animas CGM system.

It just seems like the wait is forever!!! And my husband is plagued by overnight hypoglycemai so we really do need to get something sooner than later...no matter how imperfect the software, I guess...

Bennet said...

I am still looking for a piece of software that works for the patient. Most is hawked as helping your doctor better understand you.

WTF we are the primary care givers. We need to know what is going on and we need to make our own variables in our software to track our numbers.

It aint the Dr's and it aint the equipment co.'s, it is our data.

If our BG swings from sports we need a sports field in our data base. If the stress of acedemic test make our kids blood swing we need that field too.

We are going to see this about as soon as we see the Holy Grail.
http://ydmv.blogspot.com/2007/08/and-i-would-like-side-order-of-holy.html

Jim L said...

I agree. I have the 722 and the CGM and while I have a love/hate relationship with the sensor... I love my pump.. and I think that monkey with stubby fingers created the web interface. Sometimes it finds the monitor, sometimes it doesnt. The interface looks like college kids wrote it. However, I do like the PDFs it creates.

Anonymous said...

I am having a problem when I go into carelink and go to up load reports it takes me right back to my desk top screen. Does anyone know how to fix this?

John said...

Try mycareconnect.com which is a new web-based tool. We use for my daughter to communicate with her, the school nurse and teachers while she is at school. Children's Dallas also uses it to access her information (logs). It has the ability to capture notes along with a lot of great features. It is very easy to use.

Anonymous said...

I can understand what they are talking about "non userfiendly software."

I have lost my logan icon and have been trying to replace it for the last hour, and can not find the logan page to download my data from my pump.

The company has too much information posted that they have made it almost impossible to help anyone.

Gotta keep looking.

Anonymous said...

It would be nice if they could keep the drivers up to date. I have tried to download the drivers for Windows 7 several times but have'nt had any luck. I have to find a computer running XP.

Also I no longer use the CGM. It's readings are so far off. I have had readings in the 300s when the CGM said my bg was 65.

Wendy said...

I have had those variations with the Minimed. I usually just stop the sensor and start over and things seems to work out.

I just don't understand how companies can invest so much in one aspect of their product line and just blow off the other that supports it. Dude. You could open source this and get a super system back from a college student. The data is there. Hey, I wonder if that is possible?