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The Crisis in Diabetes Education: Essential Care That's Riddled with Problems, and What We Can Do to Fix It


Nov 15, 2007

Amy Tenderich is host of the popular web log www.diabetesmine.com.

Diabetes educators are no less than a lifeline for patients, providing vital insights into the self-care behaviors that keep diabetes in check: managing blood sugar, dosing medications and insulin, exercising, and understanding all the numbers involved.

Yet many patients never get referred to these specialists at all. Even when they do manage to get a doctor's referral for diabetes education, insurance may cover only a few hours per year of this critical counseling - not nearly enough to learn how to manage the disease for a lifetime.

Ironically, certified diabetes educators (CDEs) are more overworked than ever, struggling to reach existing patients even as diabetes reaches epidemic proportions. According to the National Centers for Disease Control, diabetes drains the U.S. economy of over $130 billion each year. That's more than three times the annual amount spent on diabetes patients all across Europe.

While new diabetes drugs and high-tech treatment devices are coming to market faster than ever, recruiting of new educators is almost at a standstill. This is happening for two reasons: First, the current certification process essentially serves as a barrier to becoming a CDE. Second, health insurance companies simply don't pay for enough hours with a CDE, a policy that has led to the closure of many diabetes education centers.

No matter how you slice it, the field of diabetes education is facing a crisis. There are only about 15,000 CDEs in the U.S., yet nearly 21 million Americans are already affected by diabetes, and the number is growing every day. Who will help all these patients manage their disease? In order to serve them all, every 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.

Why these disconnects? Many problems stem from the U.S. healthcare system itself. Insurance reimbursement favors acute care rather than prevention, and there is a fragmented, every-clinic-for-itself approach to procedures and funding.

But one fundamental drawback is the fact that diabetes education is not supported as a stand-alone profession at all. What patients perceive as professional diabetes educators are really nurses, dietitians, exercise physiologists, and other healthcare professionals. They have all earned the CDE title by clocking 2,000 hours of hands-on work with diabetes patients over two years and then taking a comprehensive certification exam. Without the hours of work experience, they are not eligible for the exam. This "backwards" process of accreditation makes recruiting new educators difficult at best. And even formal certification doesn't provide CDEs with any standard procedures for how to teach patients. Every hospital and each individual educator has to find their own way.

It's high time for a major overhaul of the diabetes education infrastructure. Queried about the specifics of such an overhaul, educators, physicians, and a variety of healthcare stakeholders suggest the following changes:

  • Create a sensible career path for new recruits, including some type of mentorship
  • Streamline patient access to educational services
  • Garner consistent support from both physicians and insurance providers for diabetes programs
  • Establish accepted best practices for diabetes treatment that are clearly communicated throughout the field
  • Drive more proactive participation from the patient community

Let's take a look at some ways to accomplish these goals.

PROBLEM: No Sensible Career Path for Becoming a CDE

The existing process of becoming a diabetes educator was patched together twenty years ago to certify a group of healthcare professionals who were already educating diabetes patients. These pioneers wanted official certification for the work they were doing, and they got it. But now that initial set-up has become a barrier to healthcare professionals wanting in.

Today the field is governed by two organizations - the American Association of Diabetes Educators (AADE at www.diabeteseducator.org), founded in 1973, and the National Certification Board for Diabetes Educators (NCBDE at www.ncbde.org), founded in 1986. The NCBDE governs the comprehensive CDE certification exam.

"There's no college curriculum to become a diabetes educator. Everyone comes to it in different ways," says Joyce Bohren, CEO of the NCBDE. "Maybe you get assigned to work in a diabetes education program…[but] it's not something you're going to get a bachelor's degree in. And you already have to be a licensed healthcare professional to become certified."

The four-hour certification exam is quite clinically oriented, including multiple patient problem-solving scenarios for the applicant to untangle. But the dilemma of gathering field experience in advance of formal schooling remains. To make it even trickier, the required work hours must be in a paid professional "diabetes education" position. In other words, you have to work as a diabetes educator before you can become one. Many institutions don't want to hire people without certification, so the situation becomes a Catch-22.

SOLUTION: Reform the Process of Training and Certification

  • Tiered certification: Different levels of certification should be established, including an entry exam like those required to become a CPA or lawyer, followed by a higher-level certification for seasoned veterans. A first step in that direction was taken a few years ago when the AADE and the American Nurses Credentialing Center (ANCC) joined forces to establish the BC-ADM (Board Certified-Advanced Diabetes Management) for CDEs with advanced academic degrees. Now it's time to look into reforming the certification process on the entry-level end, according to Martha Funnell, a prominent CDE from the University of Michigan who runs her own educator training program. The average diabetes educator is at least fifty years old, she says. "I feel like we're going to be gone soon if we don't change something."
  • Mentorship: Trainees should be assigned to a mentor who could show them the ropes, says Beverly Thomassian of Diabetes Educational Services in Chico, California, another CDE who leads her own educator training seminars. "I tell people who want to get started in this field…[to] hang out with other educators. This is where you start learning about how to talk about diabetes in an understandable way that makes sense to people-using motivational language versus fearful language," she says.
  • Student teaching: The governing organizations should establish a formal student teaching program or "specialty training" program, like the one young nurses undergo in hospitals when specializing in such disciplines as critical care or labor and delivery. This formal structure would also make it easier for volunteer hours to be counted towards certification. The program should emphasize effective teaching style as well as content, because no diabetes counseling program will succeed if patients find it boring or useless. "We need to deliver it in a way that keeps them coming back," Funnell says.

PROBLEM: Patients Don't Have Enough Access to Educational Services

According to current AADE President Donna Rice, access to educators is the biggest problem. "It's not the shortage of educators, but how we use them. A physician doesn't have to see every patient. Rather, patients could go directly to the educator," Rice says. "Nearly every hospital has a diabetes education program accredited by the American Diabetes Association. But the way the system's traditionally set up, it doesn't support access."

Physicians are so busy that they often don't refer patients, Rice says, and health insurance policies don't allow patients to self-refer. If patients choose to bypass the doctor referral, they forfeit insurance coverage, which means paying hundreds of dollars out of their own pocket for each hospital or clinic-based session. Most patients simply can't afford this ongoing investment.

SOLUTION: Bring Patients and Educators Together in the "Real World"

  • Point of care service: To improve access, Rice says, the AADE is focusing on placing the educators where the patients are: in the offices of primary care physicians. (Endocrinologists see only about ten percent of diabetes patients; the other ninety percent are treated by family physicians.) The AADE is planning a pilot study beginning in 2008, in which educators will be contracted to work part-time with multiple family physicians, Rice says.
  • Reimbursement for phone-based counseling: Currently insurance companies don't pay for education provided by phone. Dr. Linda Siminerio of the University of Pittsburgh Diabetes Institute and others are calling for health plans to reimburse for advice rendered over the phone by nurses and educators. This would be far less costly than multiple on-site visits and could prevent many emergency room visits, Siminerio says.
  • Retail clinics: Diabetes-specific clinics could be created, modeled after the MinuteClinic and MedExpress clinics located in Target, Wal-Mart, and CVS chains around the country. "Family physicians don't get compensated for counseling patients on diabetes management…so the delivery model needs to be reinvented. What about a basic diabetes clinic that's open seven days a week, right where people do their shopping?" suggests David Kibbe, MD, head of the American Academy of Family Physicians (AAFP) Health IT Center.
  • Deputies, webinars, and group sessions: "Since we can't grow five times as many educators overnight, why not consider deputizing other people, who might not be certified, to handle certain portions of diabetes education?" says Michael Weiss of Patient Centered Solutions, LLC, and former chair of the national board of the American Diabetes Association. He also recommends increased use of Internet teaching tools and group sessions to increase patient access to educators' knowledge. "We need to figure out how one person who reaches ten patients now can start reaching fifty patients."

PROBLEM: Doctors and Insurance Providers Aren't Supporting Diabetes Education

As an emerging segment of the healthcare profession, CDEs simply haven't gained enough clout to push their agenda through the system, experts say. Diabetes educators as a group lack the internal support they need from both doctors and insurance providers.

Many doctors are uninformed about the value of diabetes education, and they sometimes push back on other healthcare professionals whom they view as interfering between them and their patients. But educators don't have the authority to make medication dosing adjustments or other treatment recommendations on their own. Everything is subject to approval by physicians, pharmacists, or administrative committees. This is especially frustrating since those folks often aren't as up-to-date on the latest diabetes treatments as the educators themselves, Thomassian says.

Meanwhile, health plan coverage for diabetes education is sorely lacking. While diabetes education is required by law in at least 45 states, some plans cover as little as two hours of counseling for the lifetime of the patient. This lack of coverage, which makes it nearly impossible for diabetes centers to operate at a profit, has forced a number of otherwise-successful programs to shut down.

For example, the Beth Israel Medical Center diabetes program in New York City closed its doors in 2006, after operating at a loss for several years (see the New York Times' "In the Treatment of Diabetes, Success Doesn't Pay," January 11, 2006). When hospitals suffer budget deficits, diabetes education is often the first thing to be cut back - the case recently at the Barnes-Jewish Hospital in St. Louis, Missouri, and facilities like it all over the country.

It's easy to understand why hospitals must shut down programs that lose money. They're simply responding to market forces, in this case originating from insurance companies, which seem to have no motivation to pay for diabetes education. Oddly enough, insurers do cover acute care such as kidney dialysis or limb amputation. Yet they refuse to cover the proactive diabetes education programs that would save them the soaring costs of these severe complications in the long run. (For example, dialysis treatment costs $15,000 a month for one patient, yet diabetic kidney disease is completely preventable.) Why so?

The reasons seem to be purely economic. Currently, many patients switch insurance providers every few years; betting on this fact, the current insurer has no incentive to pay for preventive treatment like diabetes education, even though it would save costs in the long run. Also, many patients who develop complications later in life end up on Medicare or Medicaid, so again the commercial insurance companies have little incentive to invest in preventive diabetes care.

For this reason, the AADE and other groups have launched a campaign to utilize a "Chronic Care Model" for diabetes. The model calls for viewing diabetes education as an obligatory ongoing process throughout the life of the patient, rather than as a onetime optional event.

SOLUTION: Educate Doctors, Lobby Insurance Companies, and Think Outside the Box

  • Lobbying: The CDE community needs to stop waiting for outside assistance and take lobbying for support into its own hands, according to Michigan CDE Funnell. They should start with convincing their own colleagues, the physicians, to take up the cause. "We haven't gotten out of our little space enough to sell ourselves to the doctors. We should pitch pay-for-performance to illustrate what a difference diabetes education makes in patients' lives," she says. "Also, the AADE needs to do more lobbying to insurance providers- not just for reimbursed benefits, but also to do away with the need to work through a physician every time. This shouldn't be a barrier."
  • Doctor education: CDEs should hold at least a one-hour overview course for doctors at their institution each year, according to several CDE community leaders. The course could review the latest updates in treatment standards, such as new blood glucose goals or measures of creatinine for calculating kidney health. This would help keep the doctors up-to-date and involve them in the diabetes education process.
  • Think outside the box: Innovative programs could turn to outside funding sources like Health Evolution Partners, a new San Francisco-based venture capital firm looking to back treatments and services that "keep people out of institutions." "We're going to be investing in things that can reduce the crushing costs of healthcare," says Dr. David Brailer, who heads the equity fund.

PROBLEM: Vast Differences in How Diabetes Is Treated

Surprisingly, there is no standard protocol for how to work with diabetes patients. The AADE does publish an 800-page reference manual, along with guidelines that it calls the "AADE 7." It also offers biannual seminars called "Core Concepts." But few educators get the time off or funding necessary to attend these events. Moreover, each hospital and diabetes center has its own way of applying this information to patient care.

"The problem is there aren't any established best practices. They're called best practices, but more often they're just a consensus of ideas from really experienced people than an actual protocol for the medical side of things," says Dr. Richard Jackson, Director of Medical Affairs, Healthcare Services, at the Joslin Diabetes Center in Boston.

Jennifer Caouette, a nurse currently working with Medtronic and hoping to become a CDE (see sidebar), illustrates this point: "Some hospitals prefer to put all new type 1 patients on injections of NPH and Regular insulin. Other hospitals start all new patients on insulin pumps right away. It really depends on how advanced the program is. You could get completely different knowledge even in two hospitals across town from each other."

Keeping up on treatment advancements is a major challenge for overworked CDEs. They must renew their status either by repeating the big exam every five years or by gathering fifteen units (hours) of educational credit every year via seminars from NCDBE-recognized providers. Many educators manage the latter simply by attending one of the major annual conferences, such as the AADE Annual Meeting, where they can easily garner eighteen credits within three or four days.

Whether this annual four-day crash-course approach is really the best method for training educators is debatable. How much new content can be absorbed that quickly, especially with new medicines and technology emerging so fast? And attending lectures on new treatments is only part of the game. To be good teachers, educators also need to understand how patients learn best.

"We're stuck in the medical model. That's not the right model. It needs to be more of a public health/ communication/ education model, in which more emphasis is put on information sharing," Chico CDE Thomassian says.

SOLUTION: Standardize Treatments and Tools and Focus on Patient Outcomes

  • Stagger training: Some experts suggest doing away with the single marathon session and breaking up the educators' unit requirements throughout the year. In addition, the AADE should encourage expanding the use of Internet tools like its online Specialty Practice Groups , where educators can swap ideas and suggestions directly via message boards.
  • Standardize tools: "Best practices are tied to tools," Joslin endocrinologist Jackson says. "We need to develop standards of teaching methods that are proven to work- meaning they help change patient behavior-supported by specific tools that are known to be effective." As an example, he cites Healthyi Conversation Maps, posters that facilitate group discussion around diabetes care issues. Such tools force educators into an open-ended dialogue and away from a traditional didactic lecture, Jackson notes.
  • Focus on the patient: A shift away from a "compliance" model to a new "patient empowerment" model is already underway, experts say. "We're putting a big emphasis on educators not being judgmental and not just 'delivering the material,' but rather asking patients, 'what's important to you today?' The idea is less lectures, more interaction," says Malinda Peeples, immediate past president of the AADE.
  • Measure outcomes: It's not easy to evaluate the effects of diabetes counseling. Some programs use surveys to assess patient knowledge before and after, but knowledge doesn't always correlate with doing better, Jackson notes. A best practices protocol should include a method for measuring healthier outcomes, such as how often the patient sees the doctor, takes medication, or eats healthier, he says. The most important thing to assess is whether the patient feels better or feels motivated after a diabetes education session.

PROBLEM: Patient Apathy

A focus on outcomes is good news for patients because it means more targeted follow-up and plenty of praise for successes such as a drop in A1c. Many centers already have programs to send letters and make phone calls to patients who haven't shown up for a while. They also send out A1c and other lab test reminders in the mail, and they're making efforts to record the "quality of life" improvements they see when patients receive ongoing support.

But for diabetes education to succeed, it's also up to patients to take an active stand. Too many patients don't bother to find out about diabetes education programs in their area. Sometimes they simply assume that their insurance won't cover it, or they attend one session and then drop out, Jackson says. If patients don't demand this kind of care, they won't get it. And it's essential that they provide feedback - and not just complaints - to the referring doctor. Patient feedback is currently the only way physicians can monitor the value of such programs.

SOLUTION: Diabetes Patients Taking Charge
  • Request an educator: Patients should ask their doctors to refer them to a diabetes educator. Alternatively, they can find one on their own at www.mydiabetespartner.org. In that case, they will still have to insist on a formal referral from their doctor. If the doctor refuses this request, they might want to change doctors.
  • Report back: Patients should let their physicians know how they benefited from working with an educator. If all doctors ever hear are complaints, they can only assume that CDE services are useless. Only patients can really illustrate the value.
  • Lobby the authorities: As a community, patients can write letters to decision-makers and institutions, calling for more and better diabetes education. They can start with the Congressional Diabetes Caucus, the National Diabetes Education Program , which focuses on public awareness campaigns, and HealthierUS.gov, a national health improvement campaign.

Diabetes Education Innovators

A few groups have managed to bypass all these roadblocks and bring diabetes education to where it's needed most. A few examples of these successful independent programs are:

  • TCOYD (Taking Care of Your Diabetes): A nonprofit outfit run by Steven Edelman, MD, out of San Diego, California, TCOYD offers one-day diabetes seminars around the country. For only about $35 per person, the day includes a host of practical sessions, one-on-one counseling from experts, a product expo, and a ballroom-style luncheon worthy of the entry fee on its own.
  • The Diabetes Bus: This award-winning nonprofit initiative takes diabetes self-management classes to rural communities of North Carolina where no diabetes programs exist. Class was initially held for free on the bus in physician parking lots. It is now also held in physician offices and in hospitals where diabetes programs have shut down due to non-profitability.
  • Divabetic: A New York-based diabetes outreach program that offers free classes around the country, Divabetic has an especially upbeat fl air. The program was inspired by Luther Vandross and created by his assistant, Max Szadek. It is now sponsored by Novo Nordisk.
  • Conversation Maps Educator Training: With funding from Merck & Co., the makers of Conversation Maps, Healthy Interactions, will be conducting free training for more than 3,000 diabetes educators over the next three years.
  • CDEs Training CDEs: Enterprising educators like Thomaissan and Funnell have launched their own programs for training new educators, with particular emphasis on "patient-centered care." A few local AADE chapters are also starting to organize regional training, such as the San Francisco Bay Area's new "Becoming an Educator" sessions.

At a system level, however, Thomaissan and Funnell agree: "The way we're doing diabetes education now isn't working. A lot has to get fixed on several levels." All the stakeholders can help. See the sidebar on page 28, "Laying It on the Line," to learn what you can do to help diabetes education thrive.


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 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, 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.


A Budding CDE's Story

Becoming a CDE is mainly a process of learning by doing. Health professionals must complete a minimum of two years (2,000 hours) of professional diabetes-related practice and hands-on work with diabetes patients before they even qualify to sit for the certification exam. The conundrum for young CDE hopefuls is that they often can't get jobs because they don't carry the CDE title, but they can't earn the title until they've completed the work hours.

"To be honest, it's a pretty frustrating process," says Jennifer Caouette, 25, a Boston-based nurse who lives with type 1 diabetes herself and has been working toward her CDE title for three years now. "To already be in a defined [diabetes educator] role is a tricky situation when you don't have any credentials to back you up."

The certification board website (www.NCBDE.org) does a pretty good job of helping candidates prepare for the exam, Caouette says, but many people have difficulty ever getting to that point because the board is so specific about the type of work experience required. New candidates' work hours are often rejected if they don't fit those specific criteria.

Caouette, who plans to take the CDE exam this fall, is worried that her own hours might be rejected because her job title at Medtronic is no longer 'diabetes educator,' even though her role is to train patients on diabetes technology and management.

In fact, the CDE title is so difficult to obtain that many hospitals and companies like Medtronic have given up requiring it for new hires, Caouette notes. "Now they hire a lot of people and say they should earn the CDE within two years…but it's still a grueling process."

"The club's become a little too exclusive," says Michael A. Weiss, of Patient Centered Solutions, LLC, and former chair of the national board of the American Diabetes Association. "Patients are hungry for information, but they often don't get referred to educators at all. We need to fix the issue of access to good education for both patients and educators."


Categories: A1c Test, Blood Glucose, Blood Sugar, Diabetes, Diabetes, Insulin, Insulin Pumps, Novo Nordisk, Professional Issues, Type 1 Issues, Type 2 Issues



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Nov 15, 2007

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