Search for diabetes educational resources online, and chances are, you’re going to end up doing a lot of reading. I’ve been continuously surprised that some of the most reputable sources of information out there — ADA, JDRF, even health insurance companies and diabetes educational centers — provide resources that are entirely text-based. I mean, that’s fine if you’re someone who learns really well from textbooks, but it’s the internet: surely there’s a better way to help educate people about diabetes than to just slap up some handouts and call it a resource.
I’m interested in helping to create a novel way to help people learn about managing diabetes, and have partnered with a colleague of mine who runs an online marriage counseling program called Power of Two, funded by the Department of Health and Human Services, to see if we can create a product that’d bring online diabetes education to the next level. We’re in the stage right now where we’re trying to talk to a ton of people about what their needs are. What problems and challenges do they face in their lives as diabetics (or people caring for other people with diabetes)? If they could snap their fingers and be given a solution, what would it look like?
I figured that the Sweet Life community would be a great place to start asking questions, and I’m wondering if anyone might have thoughts they’d be willing to share. Here are some questions to get started:
1. When you were first diagnosed — either with Type 1 or Type 2 — how did you learn how to live with diabetes? How did you learn how to eat? Where did you turn to for emotional support? Was most of your training in person or online? Was anything missing? What resources or support do you wish you’d had?
2. If you’re a parent of a kid with diabetes, what did you do when your child was first diagnosed? How did you learn about diabetes? What problems and challenges did you face and what resources do you wish you’d had?
3. (For everyone.) How do you communicate with your doctor/diabetes educator? How do you keep them posted on your blood sugars and food logs? (Do you send them in ahead of time?) What do you find the most frustrating about your diabetes care (and/or interactions with your doctor)? Can you think of a way to make doctors’ visits less stressful and more productive?
4. What motivates you to take care of your diabetes? I’ve heard from some nurses and CDEs how frustrating it is that, since high blood sugars don’t feel all that bad, a lot of their patients don’t really get serious about management until they’ve already developed a complication. What incentives do you think might change that?
5. Are there any situations where even a long-term, well-educated diabetic could use some additional help? Like a nine-month, interactive guide to a diabetic pregnancy, for example, or a way to manage and record the results of a basal test.
To get the conversation started, here’s something I find frustrating: my doctors tend to just download my info off my meter right before we sit down to talk. We chat a bit about potential changes, and then I don’t see them again for three months. I think it’d be great to have a way to keep track of things between visits and get faster feedback. I’d also love something that would walk me through basal and bolus testing — a program that would explain the procedure and then lead me through the tests (maybe by text messages that remind me not to eat breakfast, then prompt me to test my bs every hour, and send the results in automatically to my doctor — who could then send me suggestions of how to tweak things).
I also think it’d have been really nice if there’d been some sort of interactive introduction to diabetes — sort of like the format for these Fluenz language classes — that taught me about some of the basics of diabetes in a reassuring and personal way. I think it’d be really cool if there were a library of learning modules — a mix-and-match collection of different mini-courses — that doctors could prescribe to their patients on an individual basis (so that you’re learning just what applies to you).
So what do you guys think? What’s missing in our current approach to learning about diabetes management and communicating with our doctors? If you could harness the power of the internet (and cell phones and ipads and all the other technology in our daily lives), what would you do with it? What resources — if provided by doctors or insurance companies — would you actually use?
(This is all very informal and none of your names or answers will be quoted anyplace or used without your permission — we’re just interested in hearing different people’s thoughts.)
To be perfectly honest I would make sure to NOT speak with a nutritionist or if I did to essentially ignore the given advice completely. Then, I would read this book: http://www.diabetes-book.com/ After 11 years of type 1 I personally find the standard dietary recommendations of low fat, “heart healthy whole grains” and mediocre blood sugar control (< 7.0 a1c) to be far more detrimental than educational. I think learning as much about your diabetes (and how to manage it) as you can is extremely important. No doctor will ever be able to manage your disease for you, it falls upon the patient… Read more »
I have had some excellent endocrinologist’s and a diabetic Nures Practicener. I think for education, available RN’s, dietitians, counselors in clinic. They would all take phone calls and have appointments to help out the Pt’s with diabetes & consult MD if dosage changes are necessary. This staff would provide a class once a month that would offer a topic to review info and current ideas for diabetic care, pump care and supply issues, plus promote sharing their experiences with the group or individually. Personally I would NOT allow anyone near Pt’s that is going to scare them with horrible complications… Read more »
Oh, one more thing!
5. Help with changing or increasing an exercise program and making necessary insulin adjustments in parallel. It would be so great to be able to do this online with an exercise physiologist/diabetes specialist. I have consulted with one in person at the Joslin, but how wonderful it would be to have the ability to check in regularly online or even get some sort of algorithm that could help with this.
Steve, Thanks so much for this. If you don’t mind me asking, how old is your daughter now? Also, that’s amazing that you remember those browser stats a year later. I remember that when I was diagnosed, they didn’t have internet in the hospital room, and what’s more, it was a Saturday so there were no diabetes specialists around. For dinner my first night, they gave me a huge plate of rice. I was incredibly lucky in that a good friend of mine went out and bought every book about diabetes he could find, which is how I made it… Read more »
1. n/a 2. My daughter was diagnosed in December 2009, two days before Christmas. Apart from the simple shock of the diagnosis, the holidays made it especially challenging — from the cheer of the hospital staff to the outreach of distracted, local support agencies. After a year, the shock has worn off and we’ve done our best to incorporate her care plan into our daily lives, but it’s still very new and frustrating to us. Most of what we learned has been what we’ve learned on our own. From day one we turned to the internet. In the… Read more »
Thanks, Jane! This is really useful and insightful. I, too, always forget what to do on sick days (which is almost more annoying when you realize that it’s possible to program all sorts of alternate basal rates and stuff into your pump ahead of time — I feel like I should be more prepared, but don’t know exactly how.) I also find it interesting how you feel you’ve got less contact now with your doctors than you did when you were diagnosed. You’d think the internet would have changed that — but instead, it almost makes it seem like doctor/patient… Read more »
1. In 1992, when I was diagnosed with Type 1, there was no online training. In the hospital, I got most of the training from nurses and a dietician. Out of the hospital, training from nurse educators, dietician, and endocrinologist at the Joslin Diabetes Ctr in Boston. All of them were willing to be in telephone contact. (The same is not true today, with the ubiquity of the Internet, although interestingly I have no email contact with any of them.) I was hungry for emotional support from others who had more experience as a person with Type 1 diabetes than… Read more »