What Ails Diabetes Education: A Call to Action

Last summer I attended the American Association of Diabetes Educators (AADE) Annual Meeting in St. Louis, MO. I went there, as usual, to learn as much about the diabetes community and industry as I possibly can. I also went there armed with a writing assignment for Diabetes Health magazine. I thought I’d compose an article on “Educating the Educators,” all about how CDEs get trained to help us. So I started interviewing everyone who had anything to do with diabetes education, from every angle — from AADE presidents to CDE trainees to family physicians to the head of the certification board to (of course) affected patients. What I discovered was a field facing a crisis.

Cde_maze See the resulting exposé finally posted over at Diabetes Health magazine as of late last week.

It’s no secret that the American healthcare system is a mess. It’s actually been referred to as “a hairball” that may take a decade or two to untangle. The problems with diabetes education are, to a large extent, rooted in this hairball. But with only about 15,000 CDEs in the US, despite nearly 21 million Americans affected — and the number growing daily — we don’t have a decade or two to wait. Who will help all these patients manage their disease?

In order to serve them all, every existing educator would have to see at least 1,400 people four times a year: this works out to more than 22 people every single weekday. NOT. As in not going to happen. Not going to help the patients even if it did happen.

We’re not going to be able to magically cure the healthcare system, either. But as it turns out, there’s a lot the various stakeholders in diabetes education could do right now to improve patient access, the education experience, and ultimately, health outcomes, if we collectively set our minds to it.

To boil down six months’ worth of research into a few paragraphs, here are the call-to-action items for each stakeholder group, including those for us patient end-user types. If you want to know the rationale behind these recommendations, please go read the article. You may find it very educational :)


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Laying It On The Line – What Each Group Can Do to Help Diabetes Education Thrive

The Governing Organizations – AADE and NCBDE: Remove the barriers to becoming a certified educator by loosening up pre-certification requirements, creating an entry-level certification, and instituting an internship or mentorship program for budding educators. Establish a “student teaching” requirement to help CDE newbies learn best practices firsthand.

Primary Care Physicians: Make it standard practice to refer all your diabetes patients to an educator. Or consider contracting a CDE part-time to work on-site with your patients. Create some sort of feedback mechanism, like a quick survey form, to evaluate patients’ experience and outcomes after seeing the educator. Be sure to ask your patients whether the education has increased their motivation to engage in self-care.

The Diabetes Educator Community: Learn about the
business side of being an educator. Consider lobbying to be part of your
job — lobbying for doctor referrals, for financial support within your clinic, and
for supportive healthcare legislation. With patients, focus not only on what
they learn, but on how they learn best. Make courses interactive and fun,
perhaps by organizing a diabetes educational cruise, a support group communal meal, or a bike
ride.

Hospital and Clinic Administrators: If at all possible, make it a priority to obtain the Joint Commission of Accreditations of Hospitals (JCAHO) accreditation for inpatient diabetes care, which proves that your standards are up to snuff (details can be found at www.jointcommission.org). Encourage your financial staff to lobby insurance providers for reimbursement of all diabetes services, including unlimited education that lasts until each patient understands how to achieve and is motivated to practice healthy diabetes self-care. Then provide the option of regular refresher courses.

Health Insurance Providers (aka Payers): Institute
standard reimbursement for monthly visits to a diabetes educator at least twelve
times per year (which will help prevent the high cost of treating complications
down the line). To make access easier for patients, make it a “self-referred
benefit,” eliminating the need for patients to beg their physicians for a
referral. Promote your company’s diabetes successes by publishing statistics
related to your diabetes care programs; for example, report your rates of
diabetes complications, strokes, kidney disease, and average A1c’s. Patients
want to know how diabetics fare long-term with your health plan, and they should
be able to find out which insurers have the best outcomes with regard to type 1
and type 2 longevity.

Patients: Ask to be referred to a diabetes educator. Insist on it, in fact. Then be sure to report back to your doctor on your experience — including the good stuff, not just complaints. In order to keep diabetes education programs from being cut, lobby the Congressional Diabetes Caucus chairperson at www.house.gov/degette/diabetes/index.html.

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Dear highly motivated DiabetesMine.com Readers,

You may not feel that you personally need the services of a diabetes educator. But keep in mind that for every “on it” patient like you, there are 20 more people out there who could desperately use some help managing their diabetes. That’s why this matters. In this case, education really can save lives.

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15 Responses

  1. Penny
    Penny November 19, 2007 at 7:46 am | | Reply

    Amy,

    I just wanted to share with your readers why all of this really is so important, even if, like you said, they themselves don’t need it.

    A couple of weeks ago I admitted a new home health patient. She is 30 years old and was diagnosed with Type 1 diabetes when she was 20. (What I was seeing her for had nothing to do with her diabetes.)

    Prior to seeing her, I had read in doctor’s notes about her “poor diabetes care”. When I saw her and reviewed her meds, I found her to be on Lantus and on Humalog. This is not unusual, but what was unusual was that she checked her sugar 3 times a day and took her Humalog according to a sliding scale (ex: if sugar is “Y” take “X amount of insulin, if sugar is “A” take “B” amount of insulin.)

    There was no carb coverage or anything like that. And, this girl has had D for 10 years!! It’s not her fault she has “poor diabetes control”. She was doing what was ordered by a doctor.

    Thankfully, she is now going to a diabetes clinic and I hope she finds a trained professional there that can actually make dose adjustments and teach her about carb counting.

  2. Sarah
    Sarah November 19, 2007 at 7:48 am | | Reply

    Like every other type of health care worker, CDEs vary in their competence, training and real-world knowledge and understanding of diabetes. It’s been my experience that the majority of CDEs fail to comprehend that each diabetic reacts differently to carbohydrates and as a result needs to spend effort and time to determine the number (and type) of carbs he or she can consume each day to meet that individual’s a1c target. Some diabetics do well on 50-60 TOTAL grams of carbohydrate per day — others can consume three times that amount and achieve an a1c of less than 5.5%. But instead of educating patients to the need to self-manage and test, test, test, most CDEs pass out a printed sheet of “what and how much to eat” and then tell the patient to just take more medication if they fail to make their numbers.

    There are some excellent CDEs, but it’s been my observation that they are definitely in the minority. Most are limited by their training and the ADA line of “one size fits all”.

  3. Ed
    Ed November 19, 2007 at 9:13 am | | Reply

    Diabetes education has been the most frustrating part of this disease for me. In the short time I’ve had type 1 I’ve searched far and wide to find a CDE who understands the nutritional needs of an athlete and how endurance sports affect the metabolism. Finding a good CDE is difficult, finding a CDE with expertise is near impossible. I agree something more needs to be done to get experts in the field in touch with the patients who need them.

  4. Kathy (araby62 on TuDiabetes)
    Kathy (araby62 on TuDiabetes) November 19, 2007 at 9:53 am | | Reply

    Amy, great article. I also drilled down and read the NY Times article you referenced. Scary to think that it all really boils down to money/profit. I personally haven’t been to a diabetes education class since I was on my parent’s insurance years ago, because none of my plans cover it. Seems like the only thing we can truly count on is each other here in cyberspace. Thanks for the great read!

  5. None Given
    None Given November 19, 2007 at 10:14 am | | Reply

    My diabetes educator was not helpful (there is no CDE in this county.) I’d be on insulin by now if I had followed her advice, and she is a type 2, also. She keeps telling people they aren’t eating enough. It’s not just eat and take meds to cover, it’s if your meds make you hypo then you aren’t eating enough if you haven’t had your 225g yet(even if you stop when you are full.)

  6. PrintCrafter
    PrintCrafter November 19, 2007 at 1:25 pm | | Reply

    Brovo, Amy! Your point on the barriers to becomming a CDE is a great one. At our clinic we’ve been pioneering the use of D-Folk both paid and volunteer to help with D-Ed. I think if we are to survive the epidemic we’ll need to turn to DDE’s (Diabetic Diabetes Educators) rather than CDEs.

    Wil

  7. RichW
    RichW November 19, 2007 at 1:57 pm | | Reply

    I became a Type 1 in 1984 and was hospitalized for a week to get my blood sugar stabilized and attend classes on treating diabetes. My wife and I both attended. The training seemed more than adequate.

    In 1987 I saw an advertisement in Good Housekeeping about DCCT. It sounded like the Framingham Heart Study for diabetes. I was excited and called immediately (it was 11:00 PM). I got a call back the next day and made an appointment that week to visit the staff at Yale Hew Haven Hospital.

    I was accepted and randomized as a member of the control group. To be honest, I was disappointed. I wanted to be part of the experimental group. As I quickly learned, it didn’t matter what group I was a part of. I learned so much about the disease and how to properly care for myself that my A1C dropped from 11.8 to 5.2 in a matter of a year. I got down to the high 4′s soon after and have been there since.

    They used to tell me I was skewing the results because my A1C’s were too low. Actually they were afraid I would have a serious event. I eat more than my share of glucose tablets.

    My point to all of this is that seeing a diabetes educator on a regular basis changed my life. The woman I first saw at Yale Hew Haven was in her mid 20′s and very capable. I still see her as part of the EDIC study. She’s now the study coordinator at Yale. I’ve been blessed to have her as a friend and care giver for 20 years and I hope to have 20+ more.

    I wish every diabetic could say this.

  8. baddecisionmaker
    baddecisionmaker November 19, 2007 at 2:03 pm | | Reply

    I’m with Wil on using diabetic diabetes educators – I think with some training, we could be great resources for each other, taking advantage of all the knowledge we’ve accumulated over the years.

  9. whimsy2
    whimsy2 November 19, 2007 at 8:20 pm | | Reply

    Your suggestions are very good, Amy — but until diabetic educators and doctors stop using the high-carb ADA recommendations as gospel, they won’t be helping diabetics gain good control. I recently read where the ADA MAY change their guidelines and downplay the current high-carb recommendations. I’ll believe it when I see it. Meanwhile, to truly help diabetics, CDEs need to stress the importance of the glycemic index and teach diabetics to avoid high GI foods. Such foods make BGs go UP. Just what diabetics don’t need.

  10. riva
    riva November 20, 2007 at 11:39 am | | Reply

    Everything you say, Amy, is true. And there’s another truth. CDEs are not trained to coach, but to direct. They “tell” patients what to do regardless of patients’ unique needs, environment, lifestyle. CDEs should be partnering with patients getting patients involved and willing to own responsibility for their own health. Marti Funnell and Bob Anderson are on a mission to train cdes to be partners and coaches, patients would really step up if treatment plans were customized and someone seemed to really care. Their book, The Art of Empowerment: Stories and Strategies for diabetes educators should be required reading for every cde.

  11. Barbara
    Barbara November 20, 2007 at 7:51 pm | | Reply

    Amy -
    As one of the bloggers for the new AADE Side by Side website, I want to thank you for writing a very informative and timely article. I was one of the original diabetes educators who took the exam 21 years ago and I must say, I have found my calling. The vast majority of my peers also remain passionate about diabetes care and education, trying to improve the lives of people with diabetes. I just returned from a meeting of my colleagues and we were discussing how busy everyone was. Now I know why! We are all trying to do our share to see those 22 people a day! I would like to invite you to join us at the AADE website mydiabetespartner.org. Together we can raise our voices to improve care for those individuals living with diabetes. Thanks again and keep up the excellent work!

  12. jacque
    jacque November 24, 2007 at 7:26 pm | | Reply

    I live in the Minneapolis area, home of the International Diabetes Center and Medtronic. Whenever I read an article that references “your diabetes team” I let out a sigh and think “oh ya.” I’ve been a type 1 for 45 years and do 5 high intensity workouts per week, running and biking. I have yet to find a CDE who has any idea about CHO gms burned per minute of exercise. We are all told to exercise, but little or nothing on the type, whens and how to incorporate exercise into our daily routines. We truly have a condition where we are in charge and the ones who need to determine what’s best for us and not rely on CDE’s or physicians. I see my endocrinologist every 6 months for 15 minutes. I have diabetes 24×7. I believe the best advice a CDE can give a newly diagnosed Type 1 is test 8-10 times a day and keep detailed logs and notes. Review them every 2 weeks to look for trends and make adjustments and repeat the above again and again.
    jacque

  13. Jessica Veldhuis
    Jessica Veldhuis November 25, 2007 at 10:03 pm | | Reply

    Hi, I’m new to this site, but not to diabetes! I’ve been type 1 for almost 15 yrs. I TOTALLY agree with your recommendation that the requirements to become a CDE are less stringent. I’m a nurse and it’s my eventual goal to become a CDE, but the process is extremely daunting especially b/c I have a 1yr old and work full-time as an RN. I will be a great CDE someday though, hopefully sooner if they make it easier to get qualified!!! :-)

  14. Prudence
    Prudence November 27, 2007 at 12:28 am | | Reply

    Great article, Amy!

    In the Philippines, there is also an “epidemic” of diabetes and what I think worsens it is the lack of education about the disease and a lot of patients are still undiagnosed, though mostly to be blamed for this is that not many people (especially the poor) can afford consult with a primary care physician, let alone a specialist. Though there are government hospitals where they could go for consult and they don’t have to pay anything, some are still stubborn not to observe close follow-up with their doctors, with the common excuse that they have to attend to more important things like survival and working to get food on the table for their family, which is understandable. It’s a complicated problem, this health care system and I believe that a good working health care system for the whole country is yet to be found.

  15. camille johnson
    camille johnson November 30, 2007 at 9:09 am | | Reply

    Because I recently started seeing Diabetic Educators who are excellent I am now, after being T1 for 27 years, getting my diabetes under control.
    One question: my educators told me that I should not mix my two types of insulin in the same syringe. Although my education was not the best, I did have ‘some’ education during the past 27 years and I NEVER heard this. Nor has any other diabetic I know ever heard of this. Is it true?

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