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)
  

So I think this is a widespread practice. But I can't figure out why.

Labels: data, Dexcom, diabetes, FDA, Google, healthcare, regulations

posted by Bernard @ 9:39 PM 7 Comments Links to this post