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."
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.
- 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.
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.
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 exposÃ© 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 **
While it is well-documented that there are not enough qualified diabetes educators to deliver needed services to the growing PWD population, we have been informed by AADE that their membership is not shrinking, as originally stated here.