New Project for Guideline on CGM
I just read a press release that announced a new project involving the Diabetes Technology Society and the Clinical Laboratory Standards Institute.
The two organizations are going to work together to produce a 'consensus guideline' for continuous glucose monitoring (CGM).
As the
press release (PDF) points out:
...there is no current consensus on how to compare CGM devices, how to define the appropriate level of agreement given the time lag between blood and interstitial fluid levels, or how to display and interpret data. The guideline being co-developed by CLSI and DTS will address these issues by reaching consensus on how CGM data should be presented and compared between different devices and different glucose methodologies.
I've been trying to
promote a standard just to represent the data values themselves. This agreement seems to go far beyond this.
It will take some time and hard work to agree on this guideline but I see it as an important development in the acceptance of CGM technology.
Labels: CGM, diabetes, standards
Adam Bosworth gave a speech at the 2007 American Medical Association of Informatics (AMIA) Congress.
In the speech he talked about three 'core principles' for future healthcare systems:
- Discovery: we should be able find information that we care about
- Action: We should have access to personalized services so we can get the excellent health support
- Community: We should be able to form a community with those who have similar conditions and from their health practitioners.
His
blog post provides the notes from the speech. When I read these, this comment early in the speech struck a note with me:
This vision for the future of health care starts with the premise that consumers should own their own total personal health and wellness data ... and that only consumers, not insurers, not government, not employers, and not even doctors, but only consumers, should have complete control over how it is used. [My emphasis]
As you may already know, I've tried to do a number of things so that I can get access to my data. Despite repeated attempts,
Dexcom still does not let me get to the data behind their pretty graphs. And I can't export it to another program.
And for the other diabetes devices, I can see the results as the software maker intends, but I can't export it. The
OneTouch software locks the database with a password, as does the
AgaMatrix Zero-Click software. OneTouch does have an export facility, but it's the only one of four software packages I've tried that does this.
If I can't take my data out of their system, I can't combine it and manipulate it. I can't easily share it with my healthcare team. It's unusable except within the software package. It's basically trapped there.
Remember Adam Bosworth saw ownership of my data as the premise, or assumption, on which his vision is based. If I can't access it easily, I don't own it.
As a software architect I understand the importance of raw data. You can't build a software system unless you have data that can be shared by all the pieces. This is the main reason for my
paper promising data format for blood glucose meters, and my creation of the
Diabetes Data wiki.
If you'd like to get involved and help me, I'd love to hear from you.
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Labels: diabetes, Google, software, standards
I've decided to get serious about some standard data formats for blood glucose data and insulin dosage data.
So I've created a
wiki as a collaboration tool.
I want to tackle the blood glucose data first.
What might this mean? Well here's the problem for those of us with diabetes.
How many diabetes data devices do you use? Glucose meters? Continuous glucose meters? Insulin pumps? Each of these typically collects some amount of data related to your diabetes treatment.
Have any of you got an easy way to collect this data into a single piece of software to that you can do some analysis on it?
Now imagine a future where all of the various pieces of software that come with your devices each exports the data in a common format. What might that mean?
If that format was shared and freely useable by anyone, then it allows different people to create software to collect the data and make logbooks out of it, or analyze it in different ways.
To get device makers to think about this, I've sent e-mails to various companies that are currently working on new blood glucose monitoring devices. Companies like Biosign Technologies who are developing a new
wrist-worn monitor; and Nilimed who is working on a new
continuous glucose monitor. I'm also trying to interest the
Artificial Pancreas project in supporting standard data formats as part of that effort.
Would you like to get involved? If you've got any experience with programming, especially how to use XML and process XML, then you may be able to help.
Leave a comment, or send me an e-mail (mail address on the
wiki), and I'll drop you a note.
Labels: CGM, meter, standards
Minor update
Life's been fairly busy. It seems like it's been like that for a lot of us recently.
I'm happy to say that a paper of mine has been published in the
Journal of Diabetes Science and Technology. It's about the need to standardize:
- How blood sugar data is represented by continuous glucose monitoring (CGM) devices
- How data is retrieved from CGM devices, and
- The physical interface for data retrieval from CGM devices.
You can read the
abstract as a PDF.
I do hope that my proposal will be seriously considered by device manufacturers. I'll let you know if I learn more.
Labels: bg, CGM, standards
