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

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

Yet many patients never get referred to these specialists at all. Even whenthey do manage to get a doctor's referral for diabetes education, insurance maycover only a few hours per year of this critical counseling – not nearly enoughto 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 epidemicproportions. According to the National Centers for Disease Control, diabetesdrains the U.S. economy of over $130 billion each year. That's more than threetimes the annual amount spent on diabetes patients all across Europe.

While new diabetes drugs and high-tech treatment devices are coming to marketfaster than ever, recruiting of new educators is almost at a standstill. This ishappening for two reasons: First, the current certification process essentiallyserves as a barrier to becoming a CDE. Second, health insurance companies simplydon't pay for enough hours with a CDE, a policy that has led to the closure ofmany 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 Americansare already affected by diabetes, and the number is growing every day. Who willhelp all these patients manage their disease? In order to serve them all, everyeducator would have to see at least 1,400 people four times a year: this worksout to more than 22 people every single weekday.

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

But one fundamental drawback is the fact that diabetes education is notsupported as a stand-alone profession at all. What patients perceive asprofessional diabetes educators are really nurses, dietitians, exercisephysiologists, and other healthcare professionals. They have all earned the CDEtitle by clocking 2,000 hours of hands-on work with diabetes patients over twoyears and then taking a comprehensive certification exam. Without the hours ofwork experience, they are not eligible for the exam. This "backwards" process ofaccreditation makes recruiting new educators difficult at best. And even formalcertification doesn't provide CDEs with any standard procedures for how to teachpatients. 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 avariety 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 twentyyears ago to certify a group of healthcare professionals who were alreadyeducating diabetes patients. These pioneers wanted official certification forthe work they were doing, and they got it. But now that initial set-up hasbecome a barrier to healthcare professionals wanting in.

Today the field is governed by two organizations – the American Association ofDiabetes Educators (AADE at www.diabeteseducator.org), founded in 1973, and the NationalCertification 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 toit in different ways," says Joyce Bohren, CEO of the NCBDE. "Maybe you getassigned to work in a diabetes education program…[but] it's not somethingyou're going to get a bachelor's degree in. And you already have to be alicensed healthcare professional to become certified."

The four-hour certification exam is quite clinically oriented, includingmultiple patient problem-solving scenarios for the applicant to untangle. Butthe dilemma of gathering field experience in advance of formal schoolingremains. To make it even trickier, the required work hours must be in a paidprofessional "diabetes education" position. In other words, you have to work asa diabetes educator before you can become one. Many institutions don't want tohire 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 EducationalServices

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

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

SOLUTION: Bring Patients and Educators Together in the "RealWorld"

  • 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 DiabetesEducation

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

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

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

For example, the Beth Israel Medical Center diabetes program in New York Cityclosed its doors in 2006, after operating at a loss for several years (see theNew York Times' "In the Treatment of Diabetes, Success Doesn't Pay,"January 11, 2006). When hospitals suffer budget deficits, diabetes education isoften the first thing to be cut back – the case recently at the Barnes-JewishHospital 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 frominsurance companies, which seem to have no motivation to pay for diabeteseducation. Oddly enough, insurers do cover acute care such as kidney dialysis orlimb amputation. Yet they refuse to cover the proactive diabetes educationprograms that would save them the soaring costs of these severe complications inthe long run. (For example, dialysis treatment costs $15,000 a month for onepatient, yet diabetic kidney disease is completely preventable.) Why so?

The reasons seem to be purely economic. Currently, many patients switchinsurance providers every few years; betting on this fact, the current insurerhas no incentive to pay for preventive treatment like diabetes education, eventhough it would save costs in the long run. Also, many patients who developcomplications later in life end up on Medicare or Medicaid, so again thecommercial insurance companies have little incentive to invest in preventivediabetes 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 diabeteseducation 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 Outsidethe 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 diabetespatients. The AADE does publish an 800-page reference manual, along withguidelines that it calls the "AADE 7." It also offers biannual seminars called"Core Concepts." But few educators get the time off or funding necessary toattend these events. Mor
over, each hospital and diabetes center has its own wayof applying this information to patient care.

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

Jennifer Caouette, a nurse currently working with Medtronic and hoping to becomea CDE (see sidebar), illustrates this point: "Some hospitals prefer to put allnew type 1 patients on injections of NPH and Regular insulin. Other hospitalsstart all new patients on insulin pumps right away. It really depends on howadvanced the program is. You could get completely different knowledge even intwo 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 yearsor by gathering fifteen units (hours) of educational credit every year viaseminars from NCDBE-recognized providers. Many educators manage the lattersimply by attending one of the major annual conferences, such as the AADE AnnualMeeting, where they can easily garner eighteen credits within three or fourdays.

Whether this annual four-day crash-course approach is really the best method fortraining educators is debatable. How much new content can be absorbed thatquickly, especially with new medicines and technology emerging so fast? Andattending lectures on new treatments is only part of the game. To be goodteachers, 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 bemore of a public health/ communication/ education model, in which more emphasisis put on information sharing," Chico CDE Thomassian says.

SOLUTION: Standardize Treatments and Tools and Focus on PatientOutcomes

  • 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 targetedfollow-up and plenty of praise for successes such as a drop in A1c. Many centersalready have programs to send letters and make phone calls to patients whohaven't shown up for a while. They also send out A1c and other lab testreminders in the mail, and they're making efforts to record the "quality oflife" improvements they see when patients receive ongoing support.

But for diabetes education to succeed, it's also up to patients to take anactive stand. Too many patients don't bother to find out about diabeteseducation programs in their area. Sometimes they simply assume that theirinsurance won't cover it, or they attend one session and then drop out, Jacksonsays. If patients don't demand this kind of care, they won't get it. And it'sessential that they provide feedback – and not just complaints – to thereferring doctor. Patient feedback is currently the only way physicians canmonitor the value of such programs.

SOLUTION: Diabetes PatientsTaking 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 diabeteseducation to where it's needed most. A few examples of these successfulindependent 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 doingdiabetes 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 theLine," to learn what you can do to help diabetes education thrive.


Laying It On The Line – What Each Group Can Do To Help DiabetesEducation Thrive

The Governing Organizations – AADE and NCBDE: Removethe barriers to becoming a certified educator by loosening up pre-certificationrequirements, creating an entry-level certification, and instituting aninternship or mentorship program for budding educators. Establish a "studentteaching" requirement to help newbies learn best practices firsthand.

Primary Care Physicians: Make it standard practice torefer all your diabetes patients to an educator. Or consider contracting a CDEpart-time to work on-site with your patients. Create some sort of feedbackmechanism, like a quick survey form, to evaluate patients' experience andoutcomes after seeing the educator. Be sure to ask your patients whether theeducation has increased their motivation to engage in self-care.

The Diabetes Educator Community: Learn about thebusiness side of being an educator. Consider lobbying to be part of yourjob-lobbying for doctor referrals, for financial support within your clinic, andfor supportive healthcare legislation. With patients, focus not only on whatthey learn, but on how they learn best. Make courses interactive and fun,perhaps by organizing a diabetes educational cruise, a support group, or a bikeride.

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

Health Insurance Providers (aka Payers): Institutestandard reimbursement for monthly visits to a diabetes educator at least twelvetimes per year (which will help prevent the high cost of treating complicationsdown the line). To make access easier for patients, make it a "self-referredbenefit," eliminating the need for patients to beg their physicians for areferral. Promote your company's diabetes successes by publishing statisticsrelated to your diabetes care programs; for example, report your rates ofdiabetes complications, strokes, kidney disease, and average A1c's. Patientswant to know how diabetics fare long-term with your health plan, and they shouldbe able to find out which insurers have the best outcomes with regard to type 1and 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 yourexperience – including the good stuff , not just complaints. In order to keepdiabetes education programs from being cut, lobby the Congressional DiabetesCaucus 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 professionalsmust complete a minimum of two years (2,000 hours) of professionaldiabetes-related practice and hands-on work with diabetes patients before theyeven qualify to sit for the certification exam. The conundrum for young CDEhopefuls is that they often can't get jobs because they don't carry the CDEtitle, 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, aBoston-based nurse who lives with type 1 diabetes herself and has been workingtoward her CDE title for three years now. "To already be in a defined [diabeteseducator] role is a tricky situation when you don't have any credentials to backyou up."

The certification board website (www.NCBDE.org) does a pretty good job of helping candidatesprepare for the exam, Caouette says, but many people have difficulty evergetting to that point because the board is so specific about the type of workexperience required. New candidates' work hours are often rejected if they don'tfit those specific criteria.

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

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

"The club's become a little too exclusive," says Michael A. Weiss, of PatientCentered Solutions, LLC, and former chair of the national board of the AmericanDiabetes Association. "Patients are hungry for information, but they often don'tget referred to educators at all. We need to fix the issue of access to goodeducation for both patients and educators."

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