When we heard that the American Association of Diabetes Educators (AADE) just released its newest three-year strategic plan, we were excited to learn how they’d be charting their course ahead for the coming years. But upon reviewing the document, we were mostly confused and more than a little disappointed.
What seems glaringly missing is the very patient perspective that could ensure the organization’s relevance and long-term survival…
At only eight pages and 2,000 words, our correspondent Wil Dubois points out that the plan is roughly the length of a good obituary — rather ironic given that AADE is struggling to remain afloat as its membership shrinks and its pertinence to patients remains strained at best.
The fundamental disconnect here is that patients have high expectations from the one and only national organization guiding diabetes education: Who else should be championing true “best practices” in helping patients in all walks of life to do better? Who else can encourage fresh blood (the ever-present pun!) in the field by helping to pave the way for a new generation of certified diabetes educators (CDEs)?
Yet AADE continues to view and conduct itself as a strictly old-school trade organization, concerned with protecting the jobs of its existing members, like similar orgs for accountants, insurance agents, and landscape architects — not to diss any of those worthy professions. But here, lives are at stake. Diabetes education is more than just a profession — it’s a vital lifeline for millions of patients! Or it could and should be, if done right…
The AADE supposedly conducts a “self-assessment” every three years, to determine the current needs and accomplishments of its members (13,000 in the U.S. currently), and to serve as a “navigational north star” for a proactive road map going forward.
For this latest strategic plan, they spent more than two years studying the industry and soliciting input from members, industry stakeholders, and thought leaders… but not, apparently, from PWDs – you know, people with diabetes, or the patients they are ultimately supposed to be focused on.
Even though the AADE appears to be doing better about acknowledging the need to listen to PWDs more these days, the organization apparently doesn’t see the need to include those patient-perspectives as part of their self-assessment and goal-setting exercise. Huh?!
Just to make sure that we aren’t being too hard on the organization, we reached out to the AADE to specifically ask them if they worked with any PWDs on this strategic plan. The response from communications director Diana Pihos: “Yes, we did talk with a number of people who have diabetes, but most were a part of other groups that we directly serve such as our members.”
Right.
What’s in the Plan? Crystal Ball Games, etc.
Overall, the plan is pretty glossy. It uses some general language to talk about “high level trends impacting diabetes educators,” like this statement: “New care models and technology for diabetes self-management will emerge, supporting targeted and personalized management.”
So they do acknowledge that times are a-changin’ and that a profound reform of health services delivery is on the way. But they are deliberately vague about what they’re going to do about it — because like the rest of us, they’re clearly not sure how it’s all going to shake out.
They decided to address this in a sort of cheeky way, playing a little game looking towards 2016 “considering several alternative futures” that range from dismal to utopian:
- A state of continued fragmented diabetes and chronic disease management and marginal healthcare delivery and payment reform is represented as Same Song, New Verse.
- A scenario where there are improvements in comprehensive diabetes care in spite of a marginally improved health system, which they call Bottoms Up.
- A transformed health system with lagging chronic disease management improvements, labelled Where is Waldo’s Diabetes Education.
- And a scenario assuming both major improvements in chronic disease and the health system, called Brave New World.
No matter which of these alternative futures plays out, the AADE vows to focus on these four main priorities — all of which we had some issues with:
- Investing in CDEs: This point mainly focuses on “reimbursement and payment” models and beefing up the AADE website to become what it calls “a central repository for diabetes self-management education knowledge and resources.” (How many DOC resources might be included? Hopefully, some of the more DOC-involved educators out there will push this issue… names like Hope Warshaw, Michelle Litchman, Iris Sanchez, Jane Dickinson come to mind.)
- Advancing the health of the diabetes population: The language here includes “demonstrating the value of diabetes education expertise in various healthcare management settings” and “increasing the number of qualified diabetes educators,” by adding university classes. So… um, patients’ idea of advancing diabetes health and the AADE’s idea of advancing diabetes health might differ.
- Empowering people with diabetes: The AADE’s goal in empowerment is to “heighten awareness” of the value of diabetes educators (so no more whining about your co-pay!). Under the banner of empowering PWDs, we the find the No. 1 strategy is to: “Build awareness of the value of diabetes self-management education among the public, healthcare professionals, governmental agencies, and third-party payers.” In case you didn’t know it yet, a “third-party payer” is an insurance company. Again, this sounds commendable on the surface, but it seems the true agenda is marketing their own profession rather than doing anything meaningful for patients.
- Expanding the AADE’s capacity: This largely deals with getting the organization’s technology up to snuff. Oh, and to “increase financial return from products and services.” Hmmmmmm.
Not very PWD-focused, is it?
Meanwhile, in the text of the strategic plan, 2013 AADE President Tami Ross urges her members to step up to the plate and volunteer their time for the organization, saying, “It is essential that each of us do all that we can to advance AADE’s important mission and vision.” And just what is that mission?
A New Mission Forward… Or Is It?
Apparently, the AADE felt their mission statement was out of date so they opted to update it: Empower healthcare professionals with the knowledge and skills to deliver exceptional diabetes education, management and support.
But in reviewing the old statement, it’s a little unclear what exactly changed and whether it’s a step forward. As best we could tell from archived Web-documents, the previous mission statement was: Driving practice to promote healthy living through self-management of diabetes and related chronic conditions.
Hmmm…. (?)
So the new mission is to empower rather than to drive. Yes, it deals more with health delivery than with outcomes. And no more advocating for healthy living. Huh. That all seems to be going the opposite way of the larger trends in healthcare. But you might also have noticed that we PWDs aren’t mentioned in the AADE’s mission statement, either now or before. Again, this is clearly a profession-oriented organization, and we PWDs appear to be an afterthought.
At least we’re a part of the AADE’s vision statement, which remains unchanged for the moment: Optimal health and wellness for all people with diabetes and related chronic conditions. Ah! We finally enter the picture! But, whether we a part of achieving that vision is a little unclear, by the document itself.
Tall Hurdles
The AADE does acknowledge one fundamental problem: that CDEs are getting older and retiring, dropping out at a higher rate than new ones are entering the profession. And the D-educator workforce at its current growth-rate won’t keep pace with the PWD population’s needs (is it up to that task today?).
Amy actually wrote a big exposé about “The Crisis in Diabetes Education” back in 2007, detailing how the process of becoming a 
CDE is currently “backwards” and serves more efficiently to keep budding educators out than to let them in:
“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… 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.”
To be clear, AADE isn’t the organization that actually certifies educators. The extensive exam required is handled by the NCBDE (National Certification Board for Diabetes Educators). But the AADE could use their organizational influence to advocate for change.
In 2011, we featured a guest post by then-AADE President Donna Tomky about what they’ve been doing to improve the situation in recent years.
Open the Gates?!
In fact, they have for the first time ever begun to recognize “community health workers” and other non-healthcare professionals who can work alongside CDEs in the community. About a year ago, the AADE created a “Career Path Certificate” to help prepare community health workers and others get into this profession. Pihos says about 240 people have enrolled in the certificate program in the past year, primarily those who’ve already been serving as community health workers.
In addition, when AADE released an update of their national standards last fall, one of the most significant changes included modifying “Standard 5,” which defines “instructional staff.” That standard now states specifically that it’s not just nurses and dieticians serving as diabetes educators anymore, but that community educators (like Wil) and others in the healthcare arena are playing an expanded role.
This is all very positive, and we commend the changes the AADE has made on these fronts. But why not reflect these changes in the strategic plan? Why not more fully recognize the broadening educator role as well as the patient perspective?
Time for a New Alternative?
Amy’s article recommends a whole slew of possible solutions, including mentorship, student teaching, and possible tiered certification to allow a gradual entry into the field.
But not everyone in our D-Community thinks that PWDs should have an easier path to that CDE exam. Our type 1 friend and fellow D-blogger Abby Bayer, who is studying to become a CDE herself, shared her thoughts on this recently and a few dozen fellow DOC’ers chimed in with comments. Still, it does seem like our real-life experience with this disease could be better utilized by the AADE, if they truly want to boost their ranks and do meaningful work.
We reached out to a handful of other fellow PWDs who are current or aspiring CDEs to get their impressions, and they unanimously agreed that full medical knowledge is necessary and desirable for anyone wishing to practice as a CDE.
Longtime CDE and type 1 Gary Scheiner notes: “As far as AADE’s strategic plan, it looks as though there is greater emphasis on incorporating technology into diabetes education — something that’s desperately needed to reach the ever-growing number of type 2s, and better meet the learning needs of the majority of those with type 1. Of course, stating something in a strategic plan and actually making it happen are two very different things. I know that the AADE Board is made up of some of the most talented and committed people in the field, so there is definitely reason for optimism.”
Hey, if Gary’s optimistic, shouldn’t we be, too?
But Wil, who himself works in a clinic as a community diabetes educator (not a CDE) disagrees, pointing out that “there’s some spit-polish on the language but it’s basically the same old song and dance. The new plan is the old plan: Keep the damn door closed! Why? Well, the fewer people there are for the jobs, the higher the salaries. Economics 101. Organizations exist to benefit 
their members.”
Maybe the AADE is too rooted in its processes, and not patient-focused enough. Perhaps some new entity could come along and create an alternative to the model the AADE has such an iron grip on…?
The bigger issue, we think, is the lack of focus on actual patient needs. As someone who lives with diabetes and desperately needs help at times, I want to see a national organization of D-educators whose Mission and Vision are about the real-life concerns of the people struggling with this illness every day of their lives!
On top of that, they’re being a bit wishy-washy by opting out of creating a more precise plan of action on the basis that: “There’s no such thing as a fixed plan in today’s fast-paced world, and so our shared journey of learning will continue.”
not enough qualified diabetes educators to deliver these needed services to the growing population with diabetes.
What does that mean? They might soon discover that patients are at the center of their work, and revise their priorities to talk about improving real-world patient outcomes? We can only hope…
** CORRECTION: 3/19/13 at 9:20am **
While it is well-documented that there are not enough qualified diabetes educators to deliver needed services to the growing PWD population, the membership of AADE itself is not shrinking, as erroneously stated above.
Thanks for being fairly honest about the AADE. I do have problems with their “feel good” hype when thy are unable to deliver.
This may be of interest for some and may be the organization to break the lock against lay people – http://www.cdc.gov/diabetes/prevention/about.htm There is quite a bit of information in the left column on the different parts of this program.
No surprise that an organization wants to protect its own, but you might think it would want to find ways to increase its membership, too.
As current President of the American Association of Diabetes Educators (AADE), I would like to respond. AADE will review the constructive criticisms raised by this piece as we continually strive to meet the needs of diabetes educators. We do, however, appreciate the opportunity to correct several misstatements in the post:
First, to be clear, as it appears there may be misunderstanding on Diabetes Mine’s part, AADE is not a patient advocacy organization. As AADE’s name reflects, we are a professional membership organization for diabetes educators – an organization whose objective and mission is to support the needs of diabetes educators. Obviously, in order to do that we must be attuned to the needs of those living with diabetes, and we are. In fact, many members of the leadership teams who developed the strategic plan, are individuals with diabetes. And, a significant portion of AADE’s membership base are people with diabetes, as we pointed out in our email correspondence with Diabetes Mine. Certainly, there’s always opportunity for further engagement.
Second, contrary to the assertions raised, membership in AADE is not shrinking. In fact, membership has grown by more than 20 percent in the past 4 years.
Third, in regard to the length of the strategic plan document; Diabetes Mine reviewed only the overview that was posted on AADE’s web site. The full report is an internal document that is much longer and more detailed. Diabetes Mine’s comments did not reflect the many strategies encompassed within the strategic plan’s four key priorities. Notably missing were mention of AADE’s advocacy efforts,
which include updates to Medicare billing that would ultimately provide expanded access to diabetes education for those individuals with diabetes, and state licensure initiatives to insure that quality diabetes education is provided by qualified health care professionals. Also missing was mention of AADE’s focus on diabetes prevention. Ten percent of AADE’s annual budget is now dedicated to diabetes prevention efforts.
In addition to programs and services that are designed for diabetes educators, AADE will be executing a number of outreach initiatives directed toward people with diabetes. We take our cues and directions for these programs, and how to best implement them, from our members.
Without a doubt, fighting diabetes is the goal of everyone in the diabetes community, whether a patient awareness and advocacy organization, a medical society, or a professional membership-based association, such as the American Association of Diabetes Educators (AADE).
AADE’s vision, as stated in our strategic plan, is optimal health and wellness for people with diabetes and related chronic conditions. AADE’s mission to accomplish this is through ensuring the success of diabetes educators. Our members are our focus. We are proud of our heritage and our plan to move diabetes education forward.
@Tami Ross – a huge THANK YOU for taking the time to reply here and address the patient community directly.
Clearly AADE is a professional membership organization rather than one focused on patient advocacy — that is the point of this post, i.e. the disconnect highlighted at the outset. Now that social media has put such a public face on organizations like AADE, patients naturally have high expectations that such a vital organization will be advocating on their behalf.
Tami – we’d love to have your perspective on bridging this disconnect in a subsequent guest post if you’re willing.
Note: we do outline AADE’s new state licensure initiatives in some detail in the post. If there are other oversights or factual errors, we apologize and will be looking into that. Without public access to the full plan, we were of course forced to rely on the “overview” that was published.
“The full report is an internal document that is much longer and more detailed. Diabetes Mine’s comments did not reflect the many strategies encompassed within the strategic plan’s four key priorities.”
If this plan is so important, why is it hid from public view? Bloggers and others can only report on the facts provided by AADE. If you are keeping this an internal document, don’t complain when we report what we see.
Your membership may have grown by 20%, but what about those retiring and leaving the practice. This might serve to give us confidence that we are hearing the full story. Of the 13,000 members, how many are actually doing certified diabetes education? My guess is less than 8,000. Or is this information that would confirm how ineffective the AADE and it’s members have become. The listing of 13,000 members has not changed for several years, so I must ask where did the growth come from?
What PWD want is real help. Not off the shelf diabetes education but what really works in ours lives with diabetes. Thanks to my diabetes educator Gary Scheiner he gave that to me with his experience with living with diabetes and using
the same technology. We don’t want text book diabetes education. Give something that will help us in real life with diabetes. That’s all!
1. It’s a testament to the influence of Diabetesmine that the AADE has responded here.
2. I don’t see any reason for the AADE to release its internal documents.
3. I am curious whether the AADE is taking steps to making it easier for people to enter the CDE field without requiring that they first be a member of another medical profession. Why shouldn’t the designation of CDE be earned independently as a separate field of knowledge or practice?
There is a reason diabetes clinics are in hospitals. It is medical condition, which involves a whole host of complex medications, the body’s entire organ system, co-mornidities, and impacts / is impacted by other illnesses or medications. Medical conditions require medical professionals to some degree. The AADE is developing certificate programs for more general lay and health care professionals, but I doubt you will ever see a CDE who doesn’t have sufficient knowledge about how the entire body works and why. It’s more complicated than what a single PWD would be exposed to, and I don’t think you could really teach someone without essentially putting them through the same medical program. Everything is foundational.
Just gonna say something that’s gonna irk people – privatize!
Diabetes education is really important. People need to be aware of this disease even more because it is too complex and people who don’t seek medical management might increase their risk in having such complications. The AADE must focus on educating people with this kind of disease rather than focusing on the organization or the membership itself.
It is clear there are problems with diabetes education, particulary with the NHS at the momnet in chaos, I have thought much about this problem, but feel in some cases particularly with diet issues and control of the condition much
could be passed on to the patients via DVD, although there
are many booklets given to patients, I think many do not
read them, some are unable to read. I think diabetic education
on DVD would be a great idea with advice on how to manage
the condition, with such topics as foot care, hypo treatment
diet, this would save the NHS and hospitals a huge amount
of money to use in research areas.
Hi my name is Deborah Greenwood, I am a diabetes educator and a past AADE board member, and Perry Gee is Nurse Informaticist, we are both PhD students focusing our research on how technology can support self-management and improve the health and quality of life for PWD.
We are preparing a presentation for the AADE annual meeting in August titled, “The e-Patient Revolution, Personal Health Records and Diabetes Self-Management Support,” on Wednesday August 7 at 2pm. Our presentation is based on a recent paper we published in Nursing Outlook, July 2012 about e-Patients and our strong interest in the wisdom that can be created when PWD and clinicians collaborate and learn from each other. Both Perry and I are members of the Society for Participatory Medicine and actively keep up with current issues and concerns important to all health consumers.
As nurses we are advocates for PWD and using our own clinical experience we have drafted our presentation. However, after reading this blog, we thought it created an opportunity to have some discussion with passionate PWD who are actively engaged here in this online community and then to share this information during our presentation.
If you would be willing to speak with us, to help us enhance our presentation, and incorporate the DOC views on how PWD and diabetes educators can improve partnership and collaboration using technology, please email us. deborah.greenwood@ucdmc.ucdavis.edu or perry.gee@ucdmc.ucdavis.edu
We believe this blog has generated important discussion and we value the wealth of knowledge and experience of PWD.
Did you see that MCHES professionals will be eligible to sit for the CDE exam starting in 2014? I’d love to hear your thoughts on this.
http://www.sophe.org/MCHES_Diabetes_Educator.cfm