A slightly bigger theme than usual at the American Diabetes Association’s Scientific Sessions this year was behavioral change for people with diabetes. As in, motivating us to embrace and maintain good behaviors that positively affect and change our diabetes management.
(Pause… before I break out in laughter!)
Isn’t that the story of most of our lives with diabetes: how to get motivated and stay on top of our D-Management? And if we long-timers can’t figure it out, how in the heck do the medical professionals think they are going to make it happen?!
Oh, well. At least they had something to talk about.
Much of the discussion was focused on type 2 and addressing the “epidemic” side of the coin, 
but the same concerns could be transferred over to the type 1 arena — especially for those of us PWDs who are struggling, facing burnout and feeling like we need to improve.
You name it, the idea came up: using the Internet to reach us or offer better management tools, offering peer support, or even rewarding us (!) with gift cards or lower insurance co-pays to do things like exercise, track our BG data, and drop our A1Cs.
Seriously. Those all came up in the handful of sessions focusing on some aspect of “behavioral outcomes.”
Yet somehow, it seemed as though the medical professionals offering these options only scratched the surface and failed to fully realize how powerful some of these methods can actually be in improving health. One main idea, that seemed surprisingly new to them: talking about diabetes, wearing it on your sleeve, sharing stories with other PWDs. All of these can help motivate someone to better manage their diabetes and, in turn, can lead to healthier choices, some experts said. You know, like what we do every day here in the Diabetes Online Community!
Dr. Nancy Petry from the University of Connecticut Health Center connected the dots between what’s happening in the substance abuse arena, saying that simple positive behavior reinforcement can be applied to diabetes management the same way — rewarding attendance at clinic visits, weight loss or exercise goal-reaching, and perks for PWDs who take their meds adequately or check their BGs a certain number of times each day. Some have given out cash or store gift cards to those patients who specifically download their pedometers regularly.
Dr. Kev
in Volpp at the University of Pennsylvania’s Health Care Management Department, who studies behavioral economics, says he’s observed insurers discounting premiums for those achieving goals, with the difference deposited into a bank account. That might not be effective for some people who don’t monitor their accounts, and it could be less motivating. He also mentioned a program where physicians are actually paying for performance — handing out $100 to patients who drop a point in their A1C, $200 for two points.
“We need a more effective way of hovering over patients that will be well-received,” Volpp said.
(Hovering? Err, not sure we like the sound of that, but his point is well-taken; patients need ongoing motivators that they can feel good about)
Of course, that’s only a temporary behavioral change and the worry is that PWDs will stop maintaining those behaviors if the doctors stop rewarding it. And then there’s the whole philosophical and ethical debate about whether patients should be rewarded for performance in the first place…
Aside from those economic aspects of changing behavior, Dr. Elizabeth Walker from Albert Einstein College of Medicine at Yeshiva University in New York uses “tailored interventions” like phone calls, text messages and even mhealth (other use of mobile devices) and peer support to help motivate behavior change. She sees some benefit, but the stats aren’t behind it at this point for significant change… that’s something that needs more study, apparently. Dr. Walker said, the “evidence doesn’t look strong” on peer support, but anecdotally “it can be powerful.” (No kidding!)
Continuing that conversation were sessions focusing on cell phone use, Skype, video games and social media use in helping to 
foster behavioral change. While the physicians and speakers seemed to initially understand the potential impact , they seemed to focus only on how the doctors can engage these 21st century tools to interact with patients in a “structured” platform — ignoring the PWD-to-PWD connections that seem to help so many in the DOC.
The theme in what many said was that these mobile or online tools don’t seem to be creating significant BG or A1C changes, and so basically “it’s not working and not worth spending time on.”
Pisha!!
That just blows my mind, from the patient side and as someone who has embraced the online community. The endless support at any hour — like when I wake up in the middle of the night because of a low and am shakily munching on Skittles and feeling alone on the planet — cannot be replicated in the doctor’s office setting. Sharing my D-Life and talking about it makes me want to do better. It keeps me accountable, more than anything my endo or CDE could ever say or do.
Unfortunately, this isn’t something being studied right now, so there’s no scientific evidence to justify it just yet, but the Patient Voice is clearly strong enough to tell our physicians that it’s working. THIS is what is changing our behavior. It’s not some judgment based on a number, or telling us what we could be doing better. It’s making connections with other people who “get it”!
You want to be a part of that, medical community? Then start looking around!
Hey DOC — Let’s help get that message offline, to connect more people. That’s how we’re going to change behaviors and help make a difference, IMHO.
 Behavior Change Debate)
Mike, your observations are right on. I can definitely relate to the fact that I’m motivated to do better because I’m writing about my D life.
Of course, the discussion was coming from a medical professional point of view, but at least some recognition of peer-to-peer support should have been noted. I suspect, however, that this will change soon. Just a feeling.
For my part, I let my endo know about my blog at my last visit, and I was shocked when she asked if she could share it with some of her patients as a motivator. So maybe part of the answer is to consciously connect with our medical team, and encourage them to connect more with us.
Wow, gift cards or cash to bring down my A1c? Huh. I am already doing the best that I can. I have had type 1 for 40 years. I don’t think I ever made a conscious decision to have a high A1c! It happens. I do my best every day to balance food, insulin and exercise (or lack of). Gift cards and cash would be nice just for the mere fact of saying, “Hey, you’re alive! You’ve had T1D for 40 yeas and you’re alive! Here’s some cash!”
Its also about what the Doc will get paid to do. Right now very few get paid to spend any time dloading data from meters – there is no way they will get paid for Online stuff…
I think Doug has a great point. Doctors have no time to “hover”. It’s hard enough finding a good endo as it is, as so many are booked and don’t take new patients. In reality, the doctor-patient “relationship” that I hear so much about rarely extends beyond a brief interaction once every three months or so. If all of my blood sugar readings and pump records were automatically and immediately available to my doctor’s office at any time, I know he or his staff wouldn’t look at them outside of appointment-time unless I specifically approached with a very specific question or concern.
I once was in a case where my medical plan had a case-worker who called me periodically to see how I was doing, to make sure I’m taking my insulin, and so forth. This person went down their checklist of questions, but really had very little to offer and very little knowledge of T1D. I grew to dread those calls from these anonymous people, calling because “they care”, and tried to get rid of them as quickly as possible. I resented having somebody look over my shoulder as if I couldn’t handle it myself. I’m doing quite well, thank you very much, and if I’m not, your directing me to a website or mailing me a pamphlet isn’t going to change that.
Mike, the majority of people with diabetes are not reaching A1C, Lipid and BP goals so we need scientific evidence from large behavioral studies to point us in the right direction. I agree that the DOC is a terrific support lifeline for many PWDs but it doesn’t necessarily translate into meaningful behavioral change. We are seeing an ever increasing number of people with poorly managed diabetes and the inevitable tragic consequences. I am very glad to see a proliferation of large scale diabetes behavioral studies and I hope they will reap some benefits.
People get tired and worn out trying to manage a disease 24×7 for the rest of their lives. It’s daunting and depressing so its not surprising goals are not being met by PWD’s. We NEED more treatment options that will more or less remove US in having to manage the illness.
Where are the islet transplants or encapsulated islets?
John, from what I’ve read, Dr. Faustman has an actual cure for diabetes and is in the human trials now. We need to support her work so that we will be cured. All the other treatments for T1D are just that, treatments. She has the cure. Look her up at Boston General Hospital where her lab is based. She has the most encouraging research and trials going of any that I’ve ever heard of in my 40 years of being a T1D.l