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.

Wait… what’s an app?

On Saturday, I had the unique opportunity to drive down to Miami and present at the meeting of the Greater Miami Area Diabetes Educators. I was asked to present on online and web-based communication tools for health care practitioners and people with diabetes. It is such a huge topic, but I only had an hour so I had to pack a lot in.

 
Miami
 
The conference participants were given a choice of three different presentations during two different break out sessions, so I actually gave my presentation twice. I knew I would present during the second session a little differently when I was interrupted shortly into my first presentation with the question, “wait, what’s an app?”
 
ipad

After talking to them about the available apps for a short time (I am admittedly not the biggest fan of diabetes related apps, don’t get the point – but had been asked specifically to cover at least the dLife and Medtronic apps) I moved on to other methods of communication. Let’s talk about e-mail. According to a recent study, the Center for Studying Health System change found that of the 4200 offices that they looked at, only 6.7% e-mailed their patients. Some (somehow!) did not have the technology – but of those that could, only 19.5% chose to use e-mail. What is the point of taking the time to use extra technology that will let you e-mail your health care provider if your health care provider does not even use e-mail?!
 
you can tell you're in Miami when...

I think I may have blown their minds when I then told them about Dr. Jennifer Dyer‘s study in which she texted encouragement and reminders to her patients. I was warned by one of the conference hosts that I would have a tough audience. He (stereotypically) warned that because the average age of the audience would be in their mid-fifties, they would be slower to accept a lot of what I was sharing.
 
traffic
 
I shared with them what I see as the benefits of more real-time communication – quick answers for brief questions, treatment adjustments between appointments, frees up appointment time for other topics, higher accountability. But I also told them that the diabetes community is not ignorant to the challenges in this process: issues of reimbursement, time, standardization, and privacy.
 
Before my presentation started, I was chatting with one of the early arrivals. I am not exactly sure why she was at the presentation because the first question she posed to me was something along the lines of, “why would I want my patients to go online? People on there will just give them bad information and advice.”
 
how fast were they going?!
 
Here’s where the rubber meets the road (pardon the pun). For most of their patients*, they are going online anyway. I gave them a hypothetical situation about a diabetic having a blood sugar in the 300s that she just can’t figure out. She calls her doctor, who of course does not answer, so she leaves a message. The audience chucked in recognition a little bit at that. I told them that right after that, she poses the same issue on twitter, updates her status on facebook, and asks her question on her favorite message board. I asked them how quickly she would start to get responses. They recognized that it would be within seconds.
 
If that is the case, then they need to (at least) be familiar with the online diabetes community and the places in which they can safely direct their patients. I could not possibly begin to recount them all, but I was able to briefly profile a few different communities.
 
I finished by reminding them that diabetes can be a very lonely disease. If I had not told them at the beginning of the presentation that I am diabetic, they never would have known. It is great if you are able to have support in person from other diabetics and have 24/7 access to your health care providers, but for a variety of reasons, for a lot of us, that is not possible. Being able to connect online to the larger diabetes community provides a level of support that our health care providers are not in a position to provide.
 
*There was an interesting mix in the audience. While it is true that a lot of their patients are online, there was also a decent size group in the audience that work at free clinics and other similar offices. A lot of their patients are actually homeless. It would be interesting to hear more about how they think the online communication tools fit with their day-to-day work.
 
I talked to one of the hosts on my way out after my second presentation, and he said they would get feedback from evaluations to me soon. The immediate feedback the attendees shared with me was positive, but it will be interesting to hear more about their thoughts. I hit some pretty bad traffic on my way home (hence the pictures in this post) due to a gnarly car accident. 
 
I was excited to share about the presentation when I got home and was able to chat virtually with a friend. Although sometimes, it felt like I may have just been talking to an empty room.
 
talking to myself


Heard some interesting updates from some of the drug/pharmaceutical reps that were in attendance. Will share that in my next post.

Category: advocacy
  • Ginger Vieira says:

    Great post!!! Wow – I’m glad they invited you to present! I especially love towards the end how you reminded them that it is a very lonely disease and that you can’t tell by looking at you that you’re diabetic.

    -Ginger

    October 11, 2010 at 8:52 am
  • tmana says:

    I have to laugh: most of the folk active in the DOC have received better, more reliable, and more up-to-date information from other PWD and from tech sites on the Internet than their doctors could even perceive. In many ways, our top peer advocates are better-advised than the licensed professionals, and the trickle-down is pretty damned decent as well.

    October 11, 2010 at 9:01 am
  • Schmancy says:

    Thanks for the blog Sara.

    Kind of makes me laugh, I got into a big arguement with my mom’s doc regarding her insulin. Sitting reaserch and things I’ve read on the DOC. He used to be my doc so I didn’t have a problem having a little exchange with him. In the end he choose not to do what I suggested or what his intern thought would be best (my suggestion) and honestly still hasn’t made the change almost a year later, sigh. There really is a lot of well supported information on-line, mind you we often need to weed through other not so reliable info. However, we are given information that we would not otherwise recieve from health care proffesionals, we are responsible for reading and reaserching other options we would like to try. And I”m pretty sure a ‘few’ people have been ‘saved’ by the DOC.

    Thanks again.

    October 11, 2010 at 9:01 am
  • George says:

    I have to agree with tmana. I get more useful and correct information from the OC than I have doctors. That is sad to say but totally true.

    And I am so happy to see you giving this presentation. The more OC members getting out and talking about our needs and the community we have the better! you are awesome.

    AND in my defense, I was making banana nut bread and I didn’t want it to burn! 🙂

    October 11, 2010 at 11:15 am
  • Sara says:

    George – you know I just love to pick on you!!! 🙂

    Ginger, tmana, and Schmancy – thank you for your comments. I look back at my original diagnosis and how horribly my case was managed. If I had even googled diabetes back then I would have saved myself so much time and grief. Once I did find the DOC, I can honestly say that has improved my management and control so much more than any HCP has (and I have some GREAT ones!).

    October 11, 2010 at 1:58 pm
  • Kelly Booth says:

    I agree with you & the others – I have learned so much more from the DOC than I ever have from doctors. I have gastroparesis, and no doctor ever helped me figure out how to manage BS with that. I when I started reading online, I learned so much and now have A1cs in the 5’s. I talked to someone else online that went to the Mayo Clinic and was told that she would never be able to get an A1c below 7 with gastroparesis. I know that is not true because I have done it. Had I not found the DOC, I would probably have at least one foot in the grave today instead of trying to figure out what time I can get on the treadmill.

    October 11, 2010 at 2:20 pm
  • David says:

    I agree that the online community is my #1 resource. I use my doc for scrips mostly.

    October 11, 2010 at 5:49 pm
  • Joy Pape says:

    Hi Sara and all. I’m a CDE. I wish I could have been at your presentation. Yes, I agree, you guys help each other A LOT! Thank you!

    EnJOY!

    Joy Pape

    October 21, 2010 at 7:08 am

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