Continuing Education For Patients

 "I don't know what I don't know." That thought crosses my mind a lot, whether it is using my computer, figuring out whether to take a class, or in managing my Type 1 Diabetes (T1D). Fortunately in the case of people with diabetes (PWD) we have a great resource ready, willing and able to help. Those professionals are your friendly, neighborhood Diabetes Care and Education Specialist. 

Let's face it: the newly diagnosed PWD gets hit with a ton of information and lifestyle changes beginning the minute they are told "you have diabetes." When it happened to me in 1994, I had to learn about mixing Regular and NPH insulin, reading a blood glucose test strip by holding it next to the strip container and comparing the colors, as well as learning all about meal exchanges. Thank God times have changed. What hasn't changed is that I was lucky to have a trained pro (called a Certified Diabetes Educator, or CDE back in the old days) to teach me in those first scary and overwhelming days. 

Now that we have rapid acting insulin, continuous glucose monitors (CGM), insulin pumps and apps to help figure out carb counting, the daily life of PWD is both easier and safer. But as tools and techniques have changed, how have we addressed growing and updating the knowledge we need to live our best diabetes life? We still have an army of trained, dedicated pros, but how are they keeping us current on best practices, tips and tricks? 

In my case, somewhere along the line the "Meal Exchange List" got dumped and replaced with "Carb Counting." If I recall correctly, when that change happened there wasn't a push to retrain patients that I was aware of. Somewhere along the line it came up in conversation and I got a 'down and dirty' explanation on how to count carbs and we figured out how to dose insulin with that information. 

When I started using a CGM in 2005 the process was more formalized. Dexcom had training materials that my CDE and I used to learn how to use it and check my proficiency. When I moved from multiple daily injections to pump therapy (first with Medtronic and now with Tandem) a similar formula was used. For the most part, these big changes in how I manage diabetes have been big events where my DCES gave me training and checked my knowledge and skills before turning me loose.

But what about the skills and knowledge gaps that I don't know about? Usually those might be identified in an appointment with my Endocrinologist or DCES if my A1C is out of whack or CGM data uncovers an issue with lows or post-meal high blood glucose readings. I could also look at the ADCES patient education pages, and comprehensive as it is, it doesn't directly fulfill my individual needs. But what about things that aren't obvious, or that it might take a longer conversation to uncover?

Here's a thought: patients could benefit from formalized "Continuing Education" just like our professional care team does. Ideally it would leverage online skill and knowledge assessments. We all do online surveys from time to time so this isn't anything revolutionary or new. This would allow our DCES to tailor our training to address what we need without taking up precious appointment time. It would be limited to the areas pertinent to our type of diabetes, the tools we use, and the skills necessary to have a healthier life.

Would it put DCES out of business? No--if anything it would increase the number of patients they can help by making more efficient use of the time they spend with patients. Identifying their needs before they walk in the door would allow more time to be spent on teaching as opposed to assessment and then teaching. The patient and the DCES would focus on skill and confidence building within an evidence based framework. No more shooting in the dark or wondering if the patient has the knowledge they need or if an opportunity was missed.

Continuing education for patients: it is long overdue.

Coaching in Type 1 Diabetes: A Patient's Perspective

One of my "Twitter Buddies" is a Certified Diabetes Educator who is working on an advanced degree. On Twitter she asked the question, "Okay, working on a school discussion. No better people to ask them those with DM themselves: What's your favorite coaching strategy from your HCP to help you prevent complications? #DSMA" Since my answer would run longer than 280 characters, here goes.

I essentially have two distinct health care teams. My primary care provider is a GP who treats veterans in the Veterans Affairs healthcare system. That patient population likely has fewer people with Type 1 Diabetes than a more diverse population than those seen by a GP in private practice. He generally helps me with regular health concerns. When it comes to Diabetes, he generally defers to my Endocrinologist while at the same time helping me get care for some of the Diabetes-related issues.

The other part of my team is led by my Endocrinologist who divides her time between the VA and work in a teaching hospital. This gives her intimate familiarity and experience at helping me manage the nuances of Type 1 Diabetes.

When I first met my PCP several years ago, he reviewed my electronic health record and said, "You need to get your A1C down." This is something I already knew going back to 1994 when I was diagnosed and shortly after the Diabetes Control and Complications Trial was published. That trial basically said there is a definitive scientific basis for the notion than lower blood glucose levels result in a lower incidence of common complications arising from Diabetes. What my PCP was saying was something I already knew, was something I was working hard to accomplish on a daily basis, but because of challenges from other complication it was something I was unable to do.

I told him something along the lines of "I've read the DCCT, I know what it says, and my Endocrinologist and I are working real hard at optimizing my A1C. However, between gastroparesis, hypoglycemia unawareness, impaired kidney function impacts on insulin efficacy and despite frequent blood glucose monitoring, use of a Continuous Glucose Monitor and the most advanced insulin pump available to me, this is (for now) as good as it gets." What I was communicating was that I am aware of the importance of lowering my A1C, but am also knowledgeable about my illness and the various factors in my particular situation that make this goal challenging. I also said, "What I need help with from you is in managing these variables." I was asking for his expertise and experience and showing him that I was going to be cooperative and willing to do my part with helpful guidance from him. Just saying "You need to lower your A1C" was simple but not helpful - what I was looking for was concrete, actionable and realistic tools and tips to meet that objective. So far, with that common outlook in place, this relationship has worked out pretty well.

With my Endocrinologist, the coaching relationship is a bit different. I am fortunate that our relationship is (as I see it) a fully collaborative partnership. As we discuss my case, we take into account clinical best practices and work them into realistic lifestyle choices that will most safely lead to optimal glycemic control. She is in close contact with my gastroenterologist, nephrologist and cardiologist as well as my PCP - the idea being that she stays informed about the other issues having a bearing on my Diabetes management.

While my healthcare team helps "Coach" me to be as healthy and happy as I can be with all of these challenging conditions, I believe that just like an athlete, coaching can only do so much - the actual performance is up to me.