18 Responses

  1. Type 1 Electrical Engineering Student
    Type 1 Electrical Engineering Student August 13, 2013 at 6:46 am | | Reply

    Thank you Amy for writing about this critical issue.

    I will write a letter and I will get some of my friends to do so.

  2. Kristin W
    Kristin W August 13, 2013 at 7:50 am | | Reply

    Hmmm…. I would LOVE to have my damn data, and my first thought is that it just makes sense to house all the D data in the EHR. My worry is re who else will have open access to this data, and what they will do with it? For example, insurance companies. I could totally see them using BG records to deny coverage for procedures or D devices. Or putting up more barriers. Interested in other people’s thoughts on this.

    1. Monique
      Monique August 13, 2013 at 6:26 pm | | Reply

      When you said insurance companies using info to deny coverage, I immediately thought about the new healthcare law. I have a pre-existing condition myself (I’m learning more about diabetes because a family member was recently diagnosed) and I hear you about the insurance issue.

      I thought I’d post that link and a few others so you can see that under the new healthcare law, just because you have pre-existing condition doesn’t mean you can’t get coverage.. Well…it SHOULDN’T mean that. No one will truly know until Oct 1st how this whole thing will shake out.

      I’m right there with you and know so many other people with diabetes or other condition (asthma, esp) that are hoping this new healthcare law means they finally get some real coverage.

  3. Scott Strumello
    Scott Strumello August 13, 2013 at 8:22 am | | Reply

    This issue is really critical, and what’s more, the politics behind cannot be overlooked. There are some in the IT industry who have pushed extremely hard to mandate electronic medical records because, as you might guess, they stand to make millions of dollars to make electronic medical records happen. Not all doctors are crazy about the idea, and a number of studies have raised serious questions as to whether the supposed benefits will be realized or the supposed cost savings will actually be achieved with electronic medical records, but that hasn’t stopped lawmakers from pushing the issue because many who have voted for it have companies pursuing them in their Congressional districts. Patient Privacy Rights, a nonprofit organization based in Texas and founded by Dr. Deborah Peel [] has raised many issues about the lack of patient control written into law and the numerous exemptions for all of the “covered entities” defined by HIPAA, but at the end of the day, this is the likely direction where our future medical records will be going. Its only a matter of time before some cash-strapped government entity might have the brilliant idea of licensing use of our medical data (perhaps without any personal identification) for analysis purposes to a drug company to help pay the bills. In any event, I do believe Anna McCollister-Slipp makes a really important point: the time for patients to act to ensure we have rights to our own data is NOW. Don’t want to try and fix it after-the-fact!

  4. Scott Strange
    Scott Strange August 13, 2013 at 8:46 am | | Reply

    Great write up about Meaningful Use, most people are not aware of this program at all, let alone what it could mean long term.

    For diabetics, getting all of our data into a single system could help address the current lack of data sharing between devices. Another part of Meaningful Use is the Blue Button ( that allows patients to print and even download data from the EHR.

    If we can download the data from all our devices in a single format, that will make developing apps to help analyze that data so much easier

  5. Anna McCollister-Slipp
    Anna McCollister-Slipp August 13, 2013 at 9:58 am | | Reply

    Thanks Amy! This is a very important opportunity for us as a community to work together to make sure our voice is heard and our needs are considered, and the window for our input is closing in the next two weeks.

    Farzad Mostashari and others at ONC, as well as some of the members of the various workgroups that are informing the meaningful use standards are supportive of incorporating our device data into EHRs, but they can’t act unless they hear from us that this is important! We need to provide the grassroots support that will enable those who want to do the right thing to act on our behalf.

    I will include a link to this page in my letter to Farzad and his staff, but please do forward letters and emails to me, so that I can make sure your voice is heard directly.

    I will keep you all updated on progress. Thanks again! – Anna

  6. Anna McCollister-Slipp
    Anna McCollister-Slipp August 13, 2013 at 10:10 am | | Reply

    Hi Kristin – great comment/concern about insurers having access to our detailed data.

    In fact, I think that our device data could be a significant benefit to improving our access to better care and treatments. Right now, almost all decisions for FDA approvals and reimbursement are made using two measures – hemoglobin A1C and hypoglycemia. While these are important, those of us who live with the disease understand that A1C is a very inadequate measure of whether or not a therapy is helpful in keeping our glucose levels steady throughout the day. Having the ability to readily import our BG and CGM data directly into the EHR would enable researchers to develop more refined measures of what works and what doesn’t.

    For instance, right now, some researchers (like David Nathan) are saying there is no benefit for insulin analogues (i.e. lantus, levemir, humolog, novolog, etc.) over the older insulins like Regular or NPH, because the difference in A1C over time is insignificant. Nobody who ever had to use NPH or Regular to manage their diabetes would agree with that, but because the academic researchers have no access to large pools of aggregated BG or CGM data, it’s difficult to make the argument against the anti-analogue camp. Incorporating our device data into EHRs would be very helpful not only for our individual care and treatment, but also for providing researchers what they need to develop better ways of assessing a device or drug’s benefit for us.

    1. Kristin W
      Kristin W August 13, 2013 at 12:21 pm | | Reply

      Thanks for this angle on the issue, Anna. Those are certainly good benefits that I hadn’t gotten to yet in my thinking about the issue. I am just highly suspicious of how payers use any newly available information, given their track record and my experiences. But I guess any power (or data?) can be used for good or evil, right?

  7. Scott Strumello
    Scott Strumello August 13, 2013 at 10:49 am | | Reply

    One additional comment: while I agree that using EMR (electronic medical records) for patient access to our data is useful, there also needs to be provisions to enable patients to determine which data they wish to be included in their medical records. Failure to request the ability to exclude certain data elements is a recipe for disaster, especially if big data get their hands on the information.

  8. Bernard Farrell
    Bernard Farrell August 13, 2013 at 11:21 am | | Reply

    Thanks Amy for continuing to fight for access to our diabetes data. It’s great to hear about Anna and what she’s trying to accomplish.

    If we can upload our data to an EHR, that should mean we can also access it on our PC or MAC. That will finally allow folks to perform meaningful analyses with it.

    Personally, I think the amount of data from CGMs alone will swamp EHRs. I also think the minute detail of when I bolused for each meal or correction won’t help my endo decide what I need to do. Getting the data into the EHR is only the very first step. We then need systems that will analyze this data and provide us with actionable information. This won’t happen quickly unless the EHR providers demand a standard data format from the different diabetes device makers.

    Interesting times. I’ll write some letters this weekend.

  9. Bernard Farrell
    Bernard Farrell August 13, 2013 at 11:31 am | | Reply

    Another brief comment. I see that the Blue Button Plus is built on top of HL7 standards. That makes sense given the widespread use of HL7. I’ve complained in the past about the cost to purchase a copy of those standards. I’m thrilled to see that HL7 is finally available for free, that should help independent developers hugely.

  10. Bernard Farrell
    Bernard Farrell August 13, 2013 at 11:38 am | | Reply

    Another link for databetics. There’s a team working on diabetes data standards for EHRs, they’ve got a wiki here. Perhaps some databetics could get involved in this development?

  11. Bob Fenton
    Bob Fenton August 13, 2013 at 11:56 am | | Reply

    Amy, Thanks for a great blog!

    Everyone – the states are already selling our medical data. See my blog here with links to the articles – In addition, the states are including too much information and those that want can match the information and arrive at you name, especially the medical insurance companies. Yes, they receive much of the information, but even the investigators in the article were able to identify people. Presently, there are no HIPAA restrictions on states and record privacy. Therefore states are selling the information.

    With that in mind, the AMA and other professional medical groups, including hospitals, are lobbying very hard to prevent patient access to medical records.

    As a person with type 2, we need this to happen as well and the sooner the better.

  12. Kristin W
    Kristin W August 13, 2013 at 12:34 pm | | Reply

    Another brief comment from me, as well. Was just speaking this last weekend with a friend and two complete strangers whom we met at a stadium (ie, we didn’t share that much in common, except we went to see the same pro soccer game on the same day). We got to talking about healthcare, and ALL four of us had “diagnoses” in our “medical records” that didn’t apply to us, bc the procedures and/or medications would not have been covered by our respective insurance companies, otherwise. Can’t help but think this happens often.

    I have another friend who has a mistake in her medical record (someone put notes/diagnosis from a different patient in her file). The payer made decisions re “previously existing conditions” and compatibility of drugs, etc. using this info. She had a horrible, tremendous time trying to get her file corrected. (She was basically told by everyone that once it is in there, there is no taking it out, and patients can’t determine what goes in/out of medical record.). These kinds of things scare me! – any excuse some of these decision-makers can use to restrict access to care!

    With the wider adoption of EHRs/EMRs, I hope some of these things can be addressed somehow. They may be small issues compared to the overall universal benefits of gathering all this data into one place and promulgating it to whoever has anything to do with providing or paying for health services, but on a person-by-person basis, it could really ruin a life!

  13. Jerry Smith
    Jerry Smith August 14, 2013 at 8:15 am | | Reply

    This is a very complicated issue. I doubt that my congressional representative would have any idea what this is about. I have a much simpler issue: Medicare Coverage of CGM. The FDA approved the MM CareLink CGM system in 2005. However, Medicare coverage is denied because of NHIC Policy Article A33614 that states CGM usage is PRECAUTIONARY. This is ridiculous and makes no sense. Yet, there has been ZERO movement by CMS to issue a National Coverage determination (NCD) that recognizes medically necessity and cost effectiveness. CGM will prevent complications of severe hypoglycemia: seizures, cognitive impairment, coma, and untimely death! It will also save money by reducing 911 calls, emergency room visits, and avoiding unnecessary hospitalizations

  14. Christian Feldt
    Christian Feldt August 14, 2013 at 6:46 pm | | Reply

    I don’t understand much of what is going on, but this isn’t much of an issue that I can see since medicaid doesn’t cover pumps or CGM’s. I wished they did, but to my knowledge they only cover meters syringes and vial insulin. If we are worried about our digital medical information wouldn’t we first need to worry about getting those devices? I am currently unemployed and am receiving government assistance, but I am having to come off my pump and CGM because medicaid doesn’t cover there supplies. Is this digital information stuff only for those off government help?

  15. Kristin W
    Kristin W August 22, 2013 at 1:23 am | | Reply

    Christian F, not if your BG data is transferred from your meter to an electronic health record.

  16. Anna McCollister-Slipp
    Anna McCollister-Slipp September 10, 2013 at 12:35 pm | | Reply

    Hi everybody – Thank you so much to those of you who sent me letters in support of incorporation of device data into MU Stage 3! I submitted my own letter, along with the letters of those from the DiabeteMine community to Farzad Mostashari, staff at ONC, CMS and HHS, and other members of the HIT policy committee. I received very favorable responses from a number of people about the letter. The committee decided to delay their final recommendation for MU3 until later this year, which is helpful. It will give those who are in support of incorporating patient-generated data into EHRs time to finalize a set of recommended data transfer standards. I think our chances are very good, but all of your support is helpful. If anybody else is interested in submitting comments or additional letters, please let me know! Thanks again to all of you and to Amy and DiabetesMine for helping generate support for this issue! – Anna

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