Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

Downloading data – The brain dump

My brain (and iPad and camera) was/were full by the end of the Diabetes Mine Innovation Summit. The summit traveled in several different directions during the day on many topics I am interested in and passionate about so I had/have a lot to share at the summit (this was popular feedback from other participants) and now on my blog as I process it all. Anyone surprised?

The day opened with the discussion of pursuing open models for diabetes care. Dr. Sidhu, Chief Scientist at UC Berkeley’s Fung Institute for Engineering Leadership, noted that health care costs are currently about 18% of the US economy. That may not seem like a lot until you realize that is 2.2 trillion dollars.

I know the diabetes community has mixed feelings about device and other pharmaceutical companies but until there is a cure, we need them. For them to stay in business, they need to be profitable among increasing pressures from competition and other costs for the companies to provide next-level services.

Consider the fact that we don’t get enough time with our health care professionals. Personally, I am in front of the medical professional responsible for my diabetes care roughly 2 total hours a year (4 appointments at 30 minutes each). That is .02% of the 8760 hours we actually live with diabetes each year.

There is one solution that does not get enough time and attention in the discussion of diabetes management. What if we all had software that didn’t require an engineering degree (or even just a PC, come on Mac!) to access, use, understand, and interpret? Think of how much good software could bridge the gap between appointments for people with diabetes!

So, if our software was easy to use and standardized across the various devices, would people with diabetes be more likely to use their software? And if we used the software, would it improve our lives with diabetes because we would be better able to identify, track, and change issues in our management? I have to believe that is true.

Listening to the discussion on diabetes technology and the statistics on software usage, I realized I am in a very small minority. Since I received my first Medtronic Carelink USB, I have been obsessed with my data. I may be one of the few people who downloads data regularly between appointments. Why would I want to be surprised sitting in the room with my doctor when I can prepare myself with the information beforehand?

Since switching to Animas, I investigated a new way to download my data and found the Diasend system. Again, it seems I am one of a few who use it, but it gives me the access to my data that I desperately crave. However to use it, I must -

  • Locate the dongle (official name for the download cable) for my Animas pump
  • Locate my Verio IQ meter and any other accessible meters I may have used since my last download
  • Locate all cords and cable for the various meters
  • Remember my user name and password to log in to Diasend
  • Open the Diasend Uploader
  • Accurately place my pump over the infrared sensor on the dongle and make sure it stays there for the download process
  • Make sure my pump is suspended but that the screen stays alert during the entire download period – probably about 5-10 minutes
  • Repeat a similar process for each meter
  • Navigate through the screens to interpret my data and spot patterns

The benefit to all this is that I can access most of my information. My health care professional can access it too – remotely, from the minute I upload it. The challenge is that she still cannot access ALL my data. While the list of compatible devices is impressive, it is still not complete. I shouldn’t feel limited in my choice of technology by what will be most easily interpreted by my doctor. She knows I use the iBGStar, but she isn’t thrilled. Believe it or not, my doctor and I came to a record keeping compromise so I could use the meter I prefer.

And so I reflect on the statement that Dr. Sidhu left us with at the end of his presentation -
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___ is the biggest problem with obtaining and interpreting diabetes data. It could be solved by ____.

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What do you think?

  • Lesley says:

    I’m on my way to the endo this a.m. with dexcom printouts in hand and one of my main questions for her is how can I use this data more effectively? I am an on-again, off-again downloaded because of all the frustrations you cite plus the difficulty in using the provided reports to find actual patterns. Then add in that my daughter is on a different pump with different downloading reqs and reports that look different and it’s really no wonder people don’t download. A lack of clear and comprehensive and actionable data is the biggest problem… It could be solved by easy-to-use software that answers questions that the patient specifically has.

    November 28, 2012 at 9:09 am
  • Caro says:

    I think the key is that the data output needs to customisable. I invariably give up with every data download system because none of them worth the way *I* want. Obviously different people want different things. It seems obvious to me that we need to be better able to manipulate the data to our needs, and none of the software I’ve come across really allows that.

    However the real key for me would be a download process that is simplified and actually works. The best download experience (and most useful data) I ever had was with the DexCom Seven+. A simple USB connection and super fast download. The only drawback was it being Windows only! One of the worst mistakes I’ve made is switching to the Animas Vibe which in 14 months I’ve only successfully downloaded 4 times. My doctors have tried, with similar results. It always hangs and the data never materialises, so we give up. I’d trade waterproof for a USB download that works, every single time. I’m also not a fan of Daisend as it organises data in a way that just isn’t useful for me. But then what really, really gets me going is that none of the companies are interested in these problems. They’ve got the money for the product and I’m stuck with it until warranty is up. Endless phone calls with support have not yielded a solution as to why I can’t download my CGM data. A CGM that you can’t download is no where near as useful as one you that you can! Emails to Diasend have gone repeatedly unanswered.

    Sorry for my rant, but I just wish that the medical device companies and health care professionals would realise how important access to good data is and actually support us in getting what we need (and want, in my case).

    November 28, 2012 at 2:30 pm
  • laura says:

    The lack of useful, customizable data formatting and analysis for the end user is the biggest problem with obtaining and interpreting diabetes data. It could be solved if the companies funded a project specific to software enhancement with a commitment to blow me away with the new stuff. I use CareLink and the version the doc looks at is 10 times better than the user version I get. In their attempt to make it user friendly did they make is almost useless? I can’t even format the pump info into logbook fashion without importing the data into Excel…but the doc gets a report like that straight from Carelink. It has squiggly lines where a bolus may have been missed, inputs symbols for set changes, line graphs! Do they think I wouldn’t be able to interpret a line graph without a medical degree?

    November 28, 2012 at 9:45 pm
    • Sara says:

      Yes. They do.

      I think they design and program for the “lowest common denominator” (if you know what I mean). So the rest of us who could actually make good use of their product actually suffer.

      November 29, 2012 at 12:04 am

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