Google on putting health into our own hands
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:
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.
Technorati Tags: Google, diabetes, dataformat, vision
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.
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.
Technorati Tags: Google, diabetes, dataformat, vision
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Labels: diabetes, Google, software, standards
posted by Bernard @ 1:54 PM
7 Comments:
Those are some good thoughts there, Bernard. Funny, I just finished posting about the same topic, from a slightly different angle:
http://www.tudiabetes.com/forum/topic/show?id=583967%3ATopic%3A2605
why not get started with the meter's publicly available interface spec? You can download it here:
http://www.armory.com/~rstevew/Diabetes/OTUltraComm.pdf
Kevin
There are a number of reasons for not using this (which I have, as well as the OneTouch specs for other meters of theirs).
Firstly, it belongs to OneTouch. Taking it might cause legal issues. Note that the URL you gave is not a OneTouch location on the web. OneTouch took most of their specs off the web some time ago.
More importantly this is a specification for a binary data format.
By using a microformat, it's easier to create the file, you can just use a text editor. It's also extremely easy to interpret. And there are even browser add-ons that now work with microformats.
Microformats can also be extended. For example the hCalendar microformat allows you to describe a single appointment or event using a few pieces of information. If you use more options you can describe a repeating event that happens on Mondays and Wednesdays between certain hours.
If we get the diabetes data microformat specified correctly then it should be possible for any meter maker (CGMs included) to use it. And best of all, any software that reads the microformat information can get the data from many meters at once.
Personally I see it as a win-win thing. Software writers would win (including sites such as sugarstats.com, sweetspot.dm and dHealth.net), and meter makers would win because the data their devices produce is consumable by any of the software sites.
What about Diabetech Kevin? Would they be interested in supporting a standard like this for the GlucoMon?
I'm not sure I understand your question... since the GlucoMON(R) is not a meter. We started our project back in 2002 from a similar perspective - let's get the data out of the meter and put it to work in new and different ways beyond what's available through the meter UI and the mfgrs PC software.
Back then I had to ask myself, do I want to lobby for universal open access...or do I want to solve a specific problem given the current state of affairs?
Prior efforts like the Connectivity Industry Consortium (CIC) attempted universal medical device data interface standardization and failed to deliver.
Obviously we decided to take off in a certain direction but we're not the only ones that took advantage of the published spec - lots of developers (individuals & companies) have done it. Only then can you begin making progress on the cool stuff - innovative analytics to effect change.
There is no way to access data from the GlucoMON directly (this is our proprietary long-range wireless device that connects to glucose meters). However, we do have research relationships with third parties through our GlucoDYNAMIX platform where we store the data on the patient's behalf. We also run all of the obvious and some not so obvious rules against the data within various clinical protocols. Reports are just one facet of the system. Unique alert algorithms, reminders and QuickTips educational messages run against the data.
We've also developed and trialed a few twists on the social network thing ala friends, family, other people with diabetes, co-workers, GPs, Endos, Diabetes Educators...who act as patient-centric teams. There's more detail about this at our programs website healthcordia.com
Through our comprehensive programs, we've moved well beyond our original focus on data access to where we now manage patients as an extension of the healthcare team. If you're at ADA next month we should meet up either before or after my talk on Sunday.
We're always open to discussing new ideas that might leverage GlucoDYNAMIX.
What might also be cool though is for you to first tap into your own meter/data and test out some of your ideas first. I don't think the meter mfgrs care if individuals and researchers use the published specs (respect FDA regs, too) but that's your call.
On the other hand, your fight to influence open access to medical devices is a worthy one and someone needs to carry the banner if it's ever to become a reality ;) The patients in our programs would benefit greatly and our ability to incorporate data would be greatly enhanced.
Hello Bernard,
I understand your frustration, I think what is needed is some sort of standardization of software (diabetes) data schema. We need our raw data because, after all, it is our raw data not the meter companies.
The option to either use it as the meter company present it or take our data and present it as we see fit without having to hand enter it.
What I cannot understand is what the meter companies gain from holding our data hostage or what they loose by making the raw data available.
Bernard,
I have issue with any software that locks the user into some proprietary or hard to use format. See my rant about that here. Let me know if/how I can help.
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