Every year the American Association of Diabetes Educators (AADE) elects new leaders, which is normally not big news for us. However, this year’s new AADE leadership should be turning heads among the patient community — because two of the ladies at the helm have been rare champions of engaging with patients and the DOC (diabetes online community) over the past several years.
Starting in January, beloved diabetes advocate and Washington DC-based educator Hope Warshaw will begin as president-elect before taking over as president in 2016. And current president-elect is Deborah Greenwood, a longtime California educator who’s currently president-elect and is second only to Hope in actively working with the DOC.
If you’ve been into D-Advocacy in recent years then you probably know Hope’s name, as she’s featured in the Diabetes Advocates brochure and has been a powerful voice in talking up the online community at conferences and helping to bring in DOC representation. She’s even created a DOC info flyer to hand out to other D-educators, about how important peer support is to the success of patients.
After the AADE’s big annual meeting a few weeks ago, we had a chance to catch up with both Deb and Hope to not only reflect on that meeting, but also hear their thoughts on the future of their organization and diabetes education overall. Note that most of our questions on “official AADE business” were aimed at Deb, since she’s serving as current president-elect, so handling those in an official capacity.
Chatting with two people on a number of fronts isn’t a quick conversation, so we’ve done our best to condense this into a digestible format that isn’t too long…
DM) First, tell us about the terms of your respective leadership spots and how you transition into those roles?
DG) Elections are in June, and new officers don’t take office until January 2015, and serve in the role for one year. And so I will become president then, and Hope will become president-elect. But to be eligible, you must be on the board for a number of years before and everyone is involved in leadership roles, so there’s a lot of experience you gather before coming into a particular role.
HW) There’s a flow of leadership and a lot is held together through … transitioning roles, up the ladder. I become president-elect at end of December/start of the year, and right now I’m kind of like the lady in waiting and learning a lot.
What do you see as AADE’s current biggest challenges?
DG) I think increasing access to quality education is our biggest challenge right now. It continues to be an under-utilized service and benefit. Medicare recognizes that only 75% of people with diabetes receive this, so we have to do better, through our national awareness campaign to educate the public and providers that DSME (diabetes self-management education) is a benefit and more people need to know about this. The AADE is also focused on translating data into evidence showing the impact of diabetes education, to help our case. With recent CDC numbers showing there are 86 million people with pre-diabetes, we have to do better and we’ve partnered with them to reach this growing population.
HW) On translating data into evidence, there’s a really exciting systematic review that we’ve been working on for more than a year and the board got a preview of recently. We have to be able to show real improvement in health outcomes, and the development and publication of a systematic review in addition to other studies/documentation will help further build the case for more and improved coverage for diabetes education services.
What are the AADE’s biggest accomplishments in the past year, and what does that mean going forward?
DG) Education content for educators is definitely our biggest accomplishment. We had 2,500 people attending the annual conference this year, and we’re very proud of our collaboration with the DOC, to inform CDEs about peer support and patient advocacy work.
We’ve continued to develop a partnership with patient groups, and with legislative representatives and advocates like Bennet Dunlap on StripSafely, to create a place where educators could go to encourage lawmakers to sign on to diabetes education legislation.
Another big area we are excited about is our Diabetes Education Accreditation Programs. These programs have grown over the years and an increasing number are being delivered within novel environments like supermarkets and pharmacies. Being able to reach those places to provide quality education is more important now than ever.
The perception has been that AADE was traditionally focused on the profession, and not using its clout to advocate on behalf of patients. Is this changing now?
DG) We’ve always been advocating on a certain level, but it’s been much more visible lately. I think that’s because of our partnerships with more coalitions and collaborations with groups like the Diabetes Online Community, where our advocacy is reaching people more than how it once did. This effort on competitive-bidding has brought so much more attention to the issue of access to the best tools.
HW) There are a few things that have helped us be more “out there” as to advocacy in the patient community. In the past year, there’s been an amazing joint effort between AADE and the DOC thanks to people like Bennet Dunlap and his StripSafely group. He helped promote AADE’s #DiabetesEd4All campaign and I think that’s generated a lot of recognition, even internally about what we’re doing. The community needs to realize that AADE is very involved in coalitions, and we’re working in Washington to make these collaborations happen. I personally have also been working to support the FDA in trying to improve nutrition labels, for getting healthier foods to people and kids, and encouraging more and better diabetes education.
Back at the 2010 Diabetes Social Media Summit, the patient community was clearly frustrated with AADE. How has the relationship with the DOC evolved?
HW) At that time I wasn’t yet on the board or leadership, but I took it upon myself to get involved in the DOC. I didn’t know anyone like Amy, Manny (Hernandez) or David (Edelman) without reading them online, but I reached out to them to see how we could talk more and make connections happen.
That first year (in 2011), we had one little program on the DOC at our annual meeting, which has grown in four years, from me throwing out a rope to say, “Hey, let’s talk about it!” to where we are now with a number of different programs and speakers at our meeting and regular interaction… There’s been an evolution of the DOC and at the same time there’s been an evolution of the AADE. Together, we’re accomplishing great things. I’m utterly thrilled and delighted to see where we are in 2014. We’ve come a long way, baby.
There’s a lot of change happening nationally in healthcare and diabetes education… how is AADE navigating all that?
DG) We’re encouraged, but it’s still early and we have more questions than answers. People are talking and incorporating diabetes education into these new and emerging ACA care models, and diabetes prevention is a part of that. There are a lot of opportunities, but we don’t have a lot of clear answers right now. It can be frustrating to work in diabetes and not always get the resources and recognition, and we seem to be waking up to that more and realizing that diabetes education is needed.
HW) Using the ACA as a cut-point in time might be a little misleading. That’s a marker, sure, but there have been a lot changes rolling out in this healthcare revolution that are separate from that. What I read and see is that there are so many models of healthcare moving forward and it’s all going to be around cost-containment and prevention, and finally realizing that, “Duh, what we’re dealing with is chronic conditions and not acute care of yesterday.” Diabetes, to me, is such a poster disease and people with diabetes are such a fantastic model for using prevention to encourage better health and healthcare models for everyone. We (the diabetes educators) can do so much at a lower cost than other providers, so I’m hoping we become a better mid-level provider option.
There’s been dissent within the D-educator ranks, with the formation of the alternative Academy of Certification Diabetes Educators in the past year to push for certification. How does AADE respond to that group?
DG) You’d have to ask them about any dissent. We have ongoing communication with them, and we’re continuing that. We do a good job for our members, but that doesn’t mean we can’t improve or evolve as we need to. We’re all working toward the same goal: helping people with diabetes.
AADE is pursuing licensure in all 50 states. It provides the legal protection for education that doesn’t currently exist. We’re all licensed on our own, but licensing legally binds you within your state. Without this, we don’t have a scope or role and it lessens the impact of D-education and doesn’t protect patients. Essentially, anyone can be an educator.
DG) The AADE is still working on condensing our “practice levels” from 5 to 3 levels — but they’re still fleshing that out. On a positive note, we’ve never had a real, true non-licensed health care provider category and so that’s we will have now. The Associate Educator role is another way to bring more into our profession.
Peer support is now more recognized, and this is one more way to incorporate people with all skills. It’s fantastic that we’re formally recognizing this community and everyone plays a role. There’s a whole committee of people who have been working on the Associate Diabetes Educator piece, and they’re continuing to refine it. It’s important to point out that we aren’t shrinking, as an organization. Our membership has grown 21% in the past three years, with more than 14,000 members. Diabetes educators are certainly evolving, and we need to evolve with them. We have more pharmacy educators out there, and they’re a part of this too. Essentially, the whole world of healthcare is evolving and we don’t know what that looks like yet.
Can you comment on the trend of more diabetes educators leaving clinical practice for the corporate side as pump and device reps?
DG) It’s too early to know if there are specific trends; we need to do some surveying to fully understand that.
HW) I don’t think this is anything new, with many educators working in the industry. Thinking back as long as I’ve been practicing, there have always been educators hired directly by the companies or doing training for them. Sometimes, I’m bothered by the fact that people who may be outside the realm of the organization and diabetes education have this narrow scope of our membership. That is, whether you work on the clinical side or in industry, we all do front line diabetes education directly with patients. But as more and more changes happen, there’s an exciting and vibrant community of diabetes educators who spend their days in facilities large and small focusing on patient safety issues, training on devices and educating, and as a part of that, all kinds of issues come up. We CDEs are continuing to broaden our wings within the healthcare arena, and we’re going to be asked in the future to take on more management tasks within our roles. That’s the world of diabetes education now.
It seems there are more and more efforts to connect educators directly with the “patient voice,” like the recent Fakebetes Challenge that CDE Michelle Litchman started. Could AADE officially support more efforts like that?
HW) I can’t give any official Yay or Nay on whether AADE might get involved in something like that, but with the working relationships we have, anything is possible. I do want to challenge one point: that diabetes educators “don’t get it.” There’s a significant percentage of AADE members who have diabetes, along with all those who’ve worked in diabetes for many, many years. Many of us do get it, and that’s important to keep in mind.
Do you see more educators embracing social media and recommending the DOC for peer support?
HW) I believe… that more educators are recommending social media to patients. There’s a lot of interest, and just look at the two sessions we had at the AADE meeting where it was a packed house. Educators are getting more engaged and encouraging patients to get more engaged, especially those working in pediatrics. It’s important to deal with HIPAA and healthcare regulations as a part of all that, and right now it seems the more research we can point to about the benefits, the more important it’s going to be in the future. That ranges from diabetes education in general to using social media as a part of our education.
What can we do, from the patient side?
HW) You can be our foot soldiers. Talk about the value we bring to the table, communicate the positive experiences and the benefits you get from educators. The AADE awareness campaign is a big effort, because people just don’t get referred. For type 2s, we’d love to see the DOC put some more work into bringing more of the type 2 audience online. We’ve seen little twinklings of more type 2s getting involved, but we need to see that community more often sharing their story and getting engaged.
Thanks to both Deb and Hope for taking the time to talk with us. We look forward to seeing how AADE further evolves!