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18 Responses

  1. The ethical imperative of diabetes interoperability | Patient | Scoop.it

    [...] Amy Tenderich writes: The fact is, a handful of manufacturers currently have a stronghold on our diabetes data. Their systems collect this vital health data for us, but are designed to withhold it so that we rely on their products exclusively to access it, share it, or analyze it. More and more patients are finding this intolerable, and are fed up with waiting for the Pharma industry to embrace long-overdue open standards. I’m a bit obsessed with this issue myself, and made it the crux of this year’s DiabetesMine Innovation Summit event. And I keep hearing about patients who are taking matters into their own hands. One of those is Benjamin West, a thirty-something type 1 software developer who lives in San Francisco and works at the networking company Meraki (they do the wifi for Motel 6 and Peet’s coffee). In his free time, he’s creating a web-based “sandbox” and recruiting other tech-savvy PWDs to help him crack the code on diabetes data sharing. No kidding! “The pump is attached to you and is performing therapy on you. You have the right to know and have access to those medical records. But for some reason, pumps and glucose meters don’t operate that way. The only way to get those records is to go through the vendor. I think there’s a real ethical imperative here, an ethical wrong,” Benjamin says.Sounds a lot like the ePatient Movement’s rally cry, “Gimme my damn data!”  [...]

  2. Bernard Farrell
    Bernard Farrell January 31, 2013 at 12:18 pm | | Reply

    I think the challenge for Benjamin is that most people don’t understand the importance of data interoperability as a foundation for more powerful reports, applications, etc. I keep referring to this as the diabetes data bus, If it’s fully interchangeable then any device can plug into this bus and add data to it, or read data from it.

    This would enable data interpretation software (subject to FDA approval) to analyze the results and help endos and patients deal with the increasing flood of data.

    If the standard is fully open (meaning it doesn’t cost $$$ to get a copy of it) I will bet the mobile market for diabetes-related apps explodes. I also know that we’ll see much more interesting reports that really help people understand what’s going on now and how to adjust things so their control and quality of life is better in the future.

    I suggested to someone in the FDA that lack of a standard was a safety issue because we can’t get a true overview of what’s happening. I figured it was worth a try but they didn’t think it could be sold as that.

    What we need is a big market player who will push this issue. if OneTouch, Minimed, or Dexcom published their data formats they might be able to build a de facto standard around that. The other alternative would be for all the diabetes device makers to have a consortium for this. As far as I know they really dont cooperate in any way.

    And in the meantime we all live with the consequences.

    Thanks Amy for continuing to push this issue.

  3. Bernard Farrell
    Bernard Farrell January 31, 2013 at 12:21 pm | | Reply

    Forgot to mention that I’m happy to volunteer in this effort. I’m proficient in Java, C, Objective-C. Understand client/server, remote APIs, threading etc.

    Please pass my email on to Benjamin.

    1. natalie hodge
      natalie hodge February 8, 2013 at 10:27 am | | Reply

      link in with me too Bernard!

  4. Judi
    Judi January 31, 2013 at 12:50 pm | | Reply

    I wish I was competent to work on this. It is something that has been just wrong for so long. It is our data, it belongs to us, and it should all be able to be looked at in one place.

  5. Ruth Deming
    Ruth Deming February 1, 2013 at 5:27 am | | Reply

    important story. thanks for writing it, amy. good luck to benjamin.

  6. Bennet
    Bennet February 1, 2013 at 6:31 am | | Reply

    I would happily buy Benjamin and Bernard a Beer (BB&BaB!) and listen to them figure out how to right this problem.

    I would think that Meaningful Use of EHR maybe something we should be exploring and talking about in the DOC as a means of leveraging conversations about our data.

    Meaningful use includes patient empowerment

    http://www.healthit.gov/policy-researchers-implementers/meaningful-use

  7. annonymous
    annonymous February 1, 2013 at 8:56 am | | Reply

    What about Continua Health Alliance?

  8. Type1Engineer
    Type1Engineer February 1, 2013 at 1:10 pm | | Reply

    There is a program on sourceforge that captures all of the USB data sent back and forth from a USB enabled device, which is particularly useful for reverse engineering. I do have a driver to the CareLink USB if anyone is interested.

    I already programmed the entire AP project (sliding mode controller-no glucagon feedback loop) in Matlab in Spring 2011, with Minimed CGM and pump data as the inputs. Any undergraduate engineering student is capable of doing it, because the students have up to calculus 3, some linear algebra, some differential equations, and concrete programming experience. Having type 1 diabetes, makes it easier to figure it out, though.

    It is really sad to think that when the first “official” AP is FDA approved and released (by the way, the term AP is really a misnomer, and it should be ditched by the JDRF), it will probably cost at least $30,000 for the person wearing the device.

    Anyways, when it comes to the medical device companies, they should be focusing on refining the design and the efficacy of the physical (and only needed) components of medical devices. Interfaces, frequently unused features (Area under curve (AUC) function on the MM pumps, anyone?), could be programmed by anyone with math and programming exposure, including basically any sort of engineer. When medical device companies make a big deal about functions such as AUC, it is really a gimmick.

    As for a data standard, the US government should have a mandate for all medical records, insurance claims, and consumer medical devices adopt a data standard. In addition, all data generated by these devices should be readily accessible by the government. The companies already have to submit 2,000 pages to the FDA for insulin pumps in order for clearance it is not a big deal for them to submit more data under a universal standard such as IEEE 11073, which is also an International Standards Organization (ISO) standard, which several countries accross the world agreed upon.

    If the US government cannot agree on adopting an ISO standard for the storage of healthcare data, I don’t know what to say. I guess we will have an upwards battle in improving the lives of anyone who has health issues–and also in the reduction in the cost of care.

    1. Bernard Farrell
      Bernard Farrell February 10, 2013 at 9:48 am | | Reply

      Type1Engineer is that USB Sniffer for Windows? If not can you post a URL?

  9. Ben West
    Ben West February 2, 2013 at 3:10 pm | | Reply

    https://github.com/medevice-users/diabetes

    Howdy all, I’m organizing everyone’s technical efforts (there are many!) to try and point in the same direction. There is a medevice google group for anyone interested.

    For those interested in just the medtronic protocol, here it is: https://github.com/bewest/decoding-carelink/tree/rewriting

  10. The “Ethical Imperative” of Diabetes Interoperability : DiabetesMine: the all things diabetes blog | Electronic Health Information Exchange | Scoop.it

    [...] MT @HugoOC: The ethical imperative of #diabetes interoperability and our right to our "damn data" http://t.co/ybcYkHy5 #HealthIT #ONC #MU  [...]

  11. natalie hodge
    natalie hodge February 8, 2013 at 10:17 am | | Reply

    Ben, You are a badass. Please Link in with me, facebook me, find me on tu diabetes, I share your thoughts and enthusiasm and I am interested to help you further your efforts.

    I am a physician, mobile health hacker, startup advisor and founder, and dmom.

    let’s talk…

  12. natalie hodge
    natalie hodge February 8, 2013 at 10:25 am | | Reply

    Bernard, here is how dex is dealing with the interoperability issue…

    have y’all seen this?

    http://www.qualcommlife.com/ecosystem-partners

    I contacted dex about the qualcom 2net partnership and they did put me in the till as an interested physician to view patient data on my emr, I use hellohealth

    All roads to dex data may be through 2net…

    1. Bernard Farrell
      Bernard Farrell February 10, 2013 at 9:45 am | | Reply

      Thanks Natalie, I’ll add this info to our medevice-users wiki.

  13. Guilherme "Gil" de Paula
    Guilherme "Gil" de Paula May 27, 2013 at 9:10 pm | | Reply

    Pancreum’s interface will be OPEN (no cost) and the complete AP system (CGM, insulin, glucagon) will NOT cost an arm and a leg.

  14. Simon Carter
    Simon Carter October 6, 2013 at 2:50 pm | | Reply

    We already have cloud-based integration of devices, live prediction and live sharing at ManageBGL.com, but like everyone else, without passive data collection, it’s much harder to make headway.

  15. Welcome to Tidepool Kent Quirk & Ben West

    [...] You can read lots more about Ben and his efforts prior to joining Tidepool here. Ben was diagnosed with T1D when he was in college. He is an active musician and worked [...]

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