Bad data day
I know you're going to think that I've lost my mind. Because what I'm complaining about may not seem that important to you. But it is probably a lot more important than you think. So bear with me.On Tuesday, I went for an eye doctor appointment to see what was going on with my right eye. I've had some blurriness in the central part of my vision for a while. So the doctor decided to take some pictures while injecting a fluorescent dye into me. That way if there are any issues, they'll show up clearly in the camera.
Now being a geek, I thought this was way cool. I asked the man doing the pictures whether I could get copies of them. I figured the kids would be interested in them, and I might post one to the Diabetes Made Visible photo group on Flickr.
Well he mentioned that I'd need to fill out some paperwork and then he could print me some copies. But I didn't want paper copies. I wanted the high resolution photos that I saw on the screen in front of me. So I said, "well I just want to take them home on a Flash drive". His immediate response is "no, you can't take the files".
Now it's not like I'm removing them. I only want a copy. When I pushed him on this, he said they're "scared what you might do with them". Now can you think of something terrible I might do? Print big posters and e-mail to folks causing heart failure? What's possible bad thing could I do with close up pictures of the back of my eyes?
So that's bad data day item #1. Oh, and by the way, there's no significant damage to my eye. So we're just going to keep watch on it (pun intended).
After I got home, I spent some time talking with someone in Dexcom. I'm trying to get one of the new Dexcom SEVEN systems with software, so I can review it.
The response is that right now they're trying to get training ready for the systems. So there are none available for review.
While I was talking with this woman, I asked why Dexcom is making it so hard for us to get to our data. Her response is that it's due to FDA restrictions.
This is bad data item #2.
I'm checking now to see if the FDA remark is actually true. I can't find anything in various advisory committee transcripts about this. I've fired off notes to some contacts within the FDA. I'll let you know what I find out.
Did you read my post about Google and health issues? Now how can we get access to our data if you have 'the' diabetes hospital (Joslin Clinic) saying "you can't have your files". And if the FDA or a device maker is saying "you can't have your data".
I'm just steamed about this!!
How can we improve things with a shrinking supply of endocrinologists, and without access to the facts we need to improve our control?
Grrr!!
Update: I currently use four pieces of diabetes-related software. All of them have the data locked down in some way.
- Dexcom: Data encrypted or in binary form (unable to crack -- so far)
- OneTouch: Data password protected (easy to crack)
- MiniMed: Data password protected (easy to crack)
- AgaMatrix: Data password protected (easy to crack)
Labels: data, Dexcom, diabetes, FDA, Google, healthcare, regulations
posted by Bernard @ 9:39 PM
7 Comments:
That is absolutely outrageous, Bernard. I hear you and it pisses me off too.
I sometimes wonder the same thing about the data I upload from my BD meter and pump into the Medtronic system.
request the prints of the eye exam and take a really good quality digital photo - you'd be amazed how well it transfers!
Hey Bernard,
I haven't had time recently to post a comment here (although there was a day or two where I did try but blogger or the internets stopped me from doing so), but I have been reading your posts and I do applaud your efforts.
I only know a little about microformats, but it does seem like a step in the right direction. And regarding the OneTouch data base, I don't think the data are even password protected in the version I have (though I'm pretty sure the version I have is out of date, and perhaps this was an "improvement" that was made between versions).
I know its only a small consolation but I do have several hundred anonymized angiograms and color fundus photographs of patients with and without diabetic retinopathy through my research and commercial work if you are interested. GerrySkews -at- gmail.com
I don't think it's a small thing especially when you are blocked from your information.
Sounds rather "big brotherish" to me. Especially since all of these meter companies offer free upgrades or discounts if you trade in your old meter. So what are they doing with the data these meters contain and the extra data that we can't get at? What are they learning about us (or our children) without our knowledge?
I'm glad you're on our side Bernard! I'm not tech savvy enough to crack the codes to access my daughter's info and you are the only one I know that questions access to data that we have the right to use. (Not that others aren't out there . . . I just haven't read their posts about it)
You might try going through your doctor to get the digital copies of your eye photos. If you were working with the tech, he/she might have been instructed not to give out the files. It's stupid..
Also, my guess is that Dexcom is using the FDA thing as an excuse. It is a pain to get things approved and so to make things go faster, I suspect they just shelved it. But if they took the time and resources to show that it was safe to release this data, I believe they could convince the FDA. I have to submit applications for review for research involving human subjects (to our institutional review board) and understand this mentality. Sometimes, you decide it isn't worth your time to fight; although with some extra effort, you can show that your request is reasonable.
I was able to get all of the data off of a Guardian RT from software that a CDE had. I don't know if this software is generally available for Minimed's CGM? But if Minimed can do it, why not Dexcom?
It aggravates me also. The Dexcom software is practically useless in its current form. You can't even really get precise timing info, which is what diabetes management is all about.
I've been dying to get raw data from minimed's Carelink system so that I can put it in a datbase and do my own stuff with it. (they have my pump, CGMS, and meter data). Today I called their software developers, and it seems that in a "not-too-distant future update" they will be adding the ability to export your data! YEAH!!!!! (Found your blog trying to figure out how to get such data.)
Jamie
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