Stumble It!
Why Data Logging Is Not the Holy Grail
Some people were surprised recently to hear me say that tools for logging glucose are “not the Holy Grail of online diabetes tools.” I stand by that assertion, and I’m going to tell you why.
There are an ever-increasing number of PC and phone-based programs that allow diabetics to log and share their BG data. While this can be useful for some, there are several shortcomings for the general PWD population, the way I see it:
1) loads of PWDs out there are not motivated to keep such detailed records. It’s a helluva a lot of work, in addition to everything else we have to do!
2) BG results alone don’t mean much of anything, without corresponding food and exercise records, which most people/programs aren’t tracking (or at least not in a way that integrates with the BG data)
3) everybody’s still pretending that your “provider” (doctor) is sitting in his office just waiting to receive your message and review all this stored data. NOT. This will never happen until the insurance system in this country is reformed such that doctors are compensated for this kind of activity.
4) so you’ve logged a load of data and can view in pretty charts and graphs. Maybe you even spot a trend. So what? Now who’s going to tell you what to do about it? Yes, you can take the charts to your doctor, but wouldn’t it be better to get some immediate feedback and guidance?
This is why I’m excited about the Keas project. What Keas is trying to do — and it’s an experiment, like anything else in “Health 2.0” right now — is take these tools to the next level, by actually helping people accomplish something for their health, beyond just keeping records.
They hope to help people to understand what their data (lab results, etc.) means, and then walk people through some useful strategies for improving their long-term health. The idea is to take all this great online record-keeping capability and information, and turn into something personalized and actionable. If this model really works the way we envision it, then — in my opinion — we will be at or very near the Holy Grail of online health tools.
In short, what I’m saying is that I’m not against keeping records, of course, it just strikes me that logging a bunch of BG data or static health information doesn’t do anything on its own. Most programs don’t help you understand your lab results, let alone teach you any useful ways to do anything about it.
Still, the No. 1 issue with sophisticated BG logging is simply burnout, if you ask me. In the words of my good blogging buddy Scott Johnson, who is certainly not any lazier than the rest of us when it comes to working on our glucose control:
“I think I’ve come to the decision that there are no systems that are awesome, because logging diabetes SUCKS! It’s nothing to do with the applications or programs – but rather the daunting task of tracking everything we need to track! It is such a difficult thing to do.”
Amen. Rather than feel guilty about it, we’re on a mission to help build a better mousetrap online health tool. Wish us luck.
We log all of our daughter’s numbers and fax them in when we see that she’s having a few highs or lows. We write down her meals (but not snacks) mainly just to figure out boluses.
I have asked if we can e-mail the numbers to the endo when needed (easier to send a PDF than wait to get to work to, a-hem, use their fax). But they said that because of confidentiality issues, they cannot receive e-mails.
I have downloaded a couple of BG tracking apps to my iPhone, but the reality is that the log book (with the log & frog) is probably the easiest method for entering her numbers.
The problem is that I then enter everything into excel every couple of weeks. Maybe this will change once we start the OmniPod (should arrive in the mail today & we’re hoping for a training appointment as soon as possible…but not the day of her school party because she misses out on enough already).
The Holy grail would be if my iPhone was also the meter and could communicate with the pump and if the records could be available on either of our phones. But then again, we would have to purchase yet another phone for her to use at school or when she’s not physically with a parent.
The reality? The only holy grail would be a cure.
Posted by: Leighann | October 19th, 2009 at 7:28 amthe combination of a cozmo pump, cozmonitor and Navigator CGMS integrates with Freestyle copilot software to show carbs, insulin and BG on one report pretty well..
If we could just add a pedometer to the pump we could add a basic activity level to the numbers as well
Its unfortunate that Smiths isnt making the Cozmo anymore
Posted by: Doug | October 19th, 2009 at 7:59 amI am a type 2 insulin dependant diabetic that tests at least 4x daily and tries to maintain a less than 98.7mg/dl BG average. I attempted to participate in your online Beta program and the program didn’t appear to acknowlege my diabetes, only my low HDL level. I can only guess that this was due to the average BG number of 95 that I entered. The type of assistance that you tout that can be provided by this program would be greatly beneficial to me if the program could assist me in maintaining my strict control.
Posted by: Michael Gray | October 19th, 2009 at 8:25 amI agree, Amy; data collection is only a small first step. Anyone who thinks it is the destination is just being lazy, looking for an easy way to feel good about their diabetes care instead of really trying to improve.
Still, the OmniPod PDM is great for data collection, since in one device (and without any extra burden on the user) it captures BG, carb intake, boluses, and basal rates. With a minimal amount of effort it can also capture rudimentary events through the use of BG “tagging” (for example, tag a BG reading as “post-exercise” etc.)
Posted by: Eric R. | October 19th, 2009 at 9:34 amIt is simple to download the data from PDM to CoPilot and see a unified view of everything. While I’m not crazy about the CoPilot software in general, it at least is a lot better than trying to stay on top of manually entering all of that into a spreadsheet or phone app.
One big problem is that the folks who make our stuff (pumps, meters etc.) see software as an side show. They make money on consumables. Everything else is an means of selling consumables and proprietary is the name of the game.
Our stuff needs to talk together to help improve care not make for more work.
Bring Forth the Grail!
Posted by: Bennet | October 19th, 2009 at 10:31 amhttp://www.ydmv.net/2007/08/and-i-would-like-side-order-of-holy.html
I am looking forward to trying it out – even from my abroad position. I hope it doesn’t force me into saying things like 7 – 8AM = Breakfast, 12 – 1 PM = Lunch, etc.
Can’t say I currently like the look of Keas. It seems pretty clunky or klugy or some other descriptive term that doesn’t let you know what I mean. Maybe I am not icon-savvy enough.
Fair Winds,
Posted by: Michael Ratrie | October 19th, 2009 at 12:59 pmMike
I agree with Leighann…no one wants to punch numbers into a glorified calculator (you all know we don’t do it daily, but more like monthly!) AND even my endo up here in Portland, Maine won’t accept perfectly good logs over the internet, AND the only good way to track your numbers is with your BG monitor (most of which will store your numbers for at least 60 days), but there is NO food monitor. We have to be responsible for ourselves and what we eat…and it will always be hard to argue with a grumbling stomach. I also agree with Leighann that the Holy Grail will be a pump that will test your BG occasionally, without intervention, and distribute the right amount of insulin. Thanks for another great, enlightening post Amy!
Posted by: xim1970 | October 19th, 2009 at 2:47 pmWe started a topic about this on TuDiabetes:
Posted by: Manny Hernandez | October 19th, 2009 at 3:19 pmhttp://tudiabetes.com/forum/topics/your-thoughts-on-logging
Logging can be a pain, and perhaps it’s not the Holy Grail, but you have to have it to get to the Grail. yes? I think Food is the hardest to keep constant track of… Carb counts are often pointless if I don’t know the food I ate. Everything else is easy to track nowadays–especially with the pump and linked meter. It has made my journey 100x better, more managable.
What’s being suggested is that diabeters becoming their own doctors. Knowing how to make the changes that will help them lead better lives… but it seems to me that lots do this already. I do. I can’t always wait for my doctor to get back to me even though he will look at my BG charts from an online source. After getting on the CGMS, I’ve been able to change my basal rates two or three times in order to tighten my control.
I look forward to trying out this software/programming. If nothing else, it would be nice to have all the testing in one spot.
Posted by: Bethanne | October 19th, 2009 at 6:28 pmEASE of logging is my Holy Grail…
Has anyone seen that wizard? I think his name was Tim… And I have this damn shrubbery to deliver..
/wink
Posted by: Scott | October 19th, 2009 at 9:50 pmAmy said: “it just strikes me that logging a bunch of BG data or static health information doesn’t do anything on its own”…
I don’t agree. Its my my experience over the past 18 years with type 1 that the simple act of writing down my BG, insulin, and rough carb intake results in better control. Not analyzing, not changing basal rates based on patterns, etc. Just writing them down. Time and again I’ve stopped keeping records and drifted away from control, then gotten back into keeping records and getting things closer to under control. My doctor says he’s seen the same thing in many other patients. It’s true that logging numbers doesn’t do anything on its own, but the act of writing something down means you’re paying attention at least long enough to enter the data. I’ve found repeatedly that that makes enough difference to justify the time.
I hate carrying a pen and paper so I used a palm pilot for years. I used a paper log most of last year, until getting my OneTouch Ping. The Ping (and the OmniPod) helps you capture all three bits of data, which has been great. Better visualization would be nice, but data logging does indeed have benefits.
Posted by: pking | October 19th, 2009 at 10:13 pmAll of the data-collection in the world won’t help any given person, unless they can help themselves…
After decades of this disease, I can pinpoint the one factor that lead to better control of this affliction–and that was changing my doctor. I used to leave the doctor’s office feeling unglued, like I was a failure that my BGC wasn’t that of a ‘normal’ person’s. Sure, that would be the ideal, but the core of my problem (my) problem, as pointed out by my ‘then’ doctor, was that I wasn’t capable of gaining control due to my innate laziness, ineptitude, etc. etc. I begged for a training program at the local hospital, and was denied, the given reason being that ‘what could they possibly teach you that you haven’t already learned yourself?’
So I wandered from one doctor to the next, and after a couple of years found someone who was able to work with me–and I with him. Everyone’s different, but I identified the one key issue that turned my control in the right direction to being: good communication between the doctor and patient. In fact, I don’t even feel like a patient when I see my doctor. He’s wearing blue-jeans, a flannel shirt, is ready and curious to discover new therapies, makes jokes, (sit’s with me for up to an hour!!!), he’s up-to-date on cutting-edge technology, but acknowledges that he’s only human and can learn from ‘me!’, makes suggestions but gives me the decision-making power—wow! It’s a far cry from past mini-dictators who had all of 15 minutes to leave me in tears and lashing myself for my own inability to function…
So I would say, take good records, don’t rely on digital records as a cure-all, rather, listen to what other’s say ‘works’, but don’t read it as the gospel, and above all, make sure you have a doctor who works for you, not you for him/her.
NB: if your Diabetes doctor is not willing to see you for a minimum of thirty minutes, if they let you feel for one minute like a failure, leave them. Seek and you shall find the right one…it may take time.
Posted by: DS | October 20th, 2009 at 12:21 amBravo!!! This is definitely going in the right direction. Until major studies confirm that keeping data for the average person with diabetes has positive and reproducible results we’re not going to see anyone, including a govt. health plan, pay for this service. It’s always good to remember that only about 25% of the diabetes population is motivated or concerned enough to take the time to do type of review. Most diabetics I talk to dont know any of their basic numbers. It’s just part of nature. But that 25% motivated group will pay for their own tools because they see the benefit to their quality of life.
Posted by: jules | October 20th, 2009 at 6:56 amManually logging sucks and cannot be maintained long term. I do love my MM with CGMS reports generated have carbs/bolus/basal/ etc. This makes tracking much much easier. However, there is more we could get out of this. Insurance needs to recognize that Diabetes need constant monitoring in order to stay motivated and healthy. I would not want any apps which require me to enter data but only if they were automatically integrated with my pump etc.
Posted by: Laura | October 20th, 2009 at 7:10 amIt’s about time people start to realize that merely collecting the data is of no direct use. Software developers are largely not going to create new means of treatment, that’s up to diabetics and innovative doctors (if there are any). The people writing the logging apps are merely mimicking what already exists and maybe making it more pretty.
What we need is decision support systems that take into account that each and every time I test my BG I do so because I want to act on the result and do something. I either want to eat, correct, or check that my assumptions about the other two earlier are correct. A data collection tool should also detect and recommend actions, such as increasing/decreasing, or at least testing basal rates. This is not something you should get once a month, recommendations should pop up when you enter the data.
Posted by: Jeff | October 21st, 2009 at 3:56 pmHello Amy,
I am very happy that I have the chance to view your site. I am new and still exploring and I will let you know what I think when I get a chance.
Thanks,
Posted by: Ricco | October 25th, 2009 at 11:28 amRicco
What a great conversation here! Thank you Amy for getting us started on it. There is a lot of great stuff over at tudiabetes.com as Manny linked to as well.
I do think that pking has a great point. The very act of logging does seem to encourage better behavior for me. But it is still a very stiff and artificial feeling (the better behavior), rather than something I could keep up with long term.
Posted by: Scott K. Johnson | October 25th, 2009 at 4:07 pmThere is little point in logging data unless you have to ability to act upon it. Why spend time and money on something you can’t use once you have got the output from it?
Posted by: David @ data acquisition | January 7th, 2010 at 9:14 pm