Talking Shop with AADE Leader Karen Kemmis (and Visions of a Big Rebranding!)

Talking with AADE’s President Karen Kemmis

DM) Hi Karen, can you start by sharing how you got into healthcare and diabetes education?

KK) I really didn’t have any personal connection to diabetes when this all started. I had been a physical therapist for 11 years and was working on my Master’s program in exercise science. The chair of the department approached me, after a physician had contacted him, about opening a Joslin Diabetes Center affiliate here at Syracuse. They wanted someone in physical therapy and exercise physiology, and I applied. Honestly, I almost forgot about it.

A few months later, I was contacted and interviewed for the position, and got the offer. I didn’t know much about diabetes personally or professionally and thought this would be a great learning experience, something I could do for a few years. That was 23 years ago. Now I know what a great field it is, and of course now know so many people with diabetes. But leading into that, I was quite naïve to it.

How was that beginning for you back in the mid-90s?

I read books and asked a lot of questions. That’s what I do in practice – talking to people with diabetes, asking what is going on, what works or doesn’t for them, their challenges and strategies we can use to help. I remember asking people early on about what they found most effective to not get low glucose while exercising. I learned a lot about diabetes just from that. The exposure I’ve gotten over the years has been incredible.

Those personal accounts must be eye-opening, since exercise is such a critical yet challenging aspect of life with diabetes…

For sure. From the physical activity and physical therapy side, I see a lot of people who have mobility and balance problems. Yes, people know they need to exercise and move around… but there are often challenges and barriers in the way. I work with people on those challenges and strategies to see what works.

I teach a physical therapy course in our university where I tell students, “If you listen carefully and ask the right questions, the person you’re seeing will reveal what their problems are, how they developed, and begin to discover what they can do to improve — and you just facilitate.” It comes down to listening, that is the name of the game.

Do you focus on any specific issues in helping patients accomplish exercise?

It’s an area that is constantly changing. Twenty years in, I never thought balance would be such a big part of what I do, but that’s how it turned out. People with diabetes have issues that can get in the way of having optimal balance – visual or inner ear problems, lower body weakness, neuropathy and loss of sensation, and just glucose fluctuations. All of that can contribute to it. And then just as we age, balance shifts across the board.

So many people I see are referred because their balance isn’t good and they can’t exercise or be mobile, and they’re nervous about that… especially this time of year in upstate New York where moving around outside is so tough with the winter weather. Of course, balance diminishes in everyone as we age and that’s true even for those functioning at the highest levels. I am always keeping an eye out for balance. It can be so individualized, and I don’t make any assumptions – especially when it comes to the older, geriatric population. You never know, so you just have to listen and speak to them in a way that resonates with them, for whatever challenges they may face.

How unique is it having someone who specializes in physical therapy and exercise lead the AADE?

I don’t think there’s ever been a physical therapist in this role, which I’m excited about. Over the years, my diabetes education friends have pointed out it’s cool that I’m a physical therapist… though that may not have always worked to my advantage, because it is different. It’s not the mainstream, like a nurse or dietician or pharmacist. I do think people appreciate the views that it brings — a different lens that can be helpful. On our AADE board right now, aside from the more common roles, we have two people who specialize in behavioral health. That’s fantastic all on its own. Having these different perspectives in varying levels of expertise, whether on our board or in our organization, is one of the beauties of AADE.

Ironically, I’ve just recently earned my nursing degree! After being a physical therapist for 35 years, I graduated in October from a registered nurse program. So I am proud that I came onto the AADE board and made it to the president role as a physical therapist, because it is unique, but I’m also pretty proud of my accomplishment with that nursing degree. My board exams are coming up on March 2.

What are your priorities for AADE in 2019?

My biggest priority is to get the word out about what diabetes educators do. I think a lot of people who are referred to diabetes education don’t necessarily have a positive sense of what that is about. Many may think about the last time when they were in an education setting, maybe high school or college, when they sat in a chair and a teacher or professor taught them what to do. Especially when you’re talking about diabetes and healthcare and something that is life-changing, the idea doesn’t sound very appealing.

We do know that diabetes education is a really under-utilized resource despite evidence showing it’s helpful. I really want to give people a better idea of what it means to see a diabetes educator, the process and how it factors into their diabetes management. That includes working with our members, other organizations, and peer support communities, making sure payers understand what we do and why reimbursement is so important, and what referring providers think about diabetes education. Their explanation can set a person up for success, and that person is going to decide on whether to see a diabetes educator based on that. That’s my big push, to get the word out.

Is that part of AADE’s ongoing conversation about the future of diabetes education overall?

Yes, AADE has spent a lot of time working on a new vision for the specialty. We’re really trying hard to advance this – through members, people with diabetes, legislative and government groups, payers and providers, and other organizations. It’s about seeing what our vision is and trying to move our members, and diabetes educators in general, into the future to be successful. That in turn helps people with diabetes be healthier.

Does that involve “rebranding” diabetes educators by giving them a different title?

It may. We’re hot on that right now. From the end of 2017 to the end of 2018, we worked with a consulting firm looking at this and creating a vision. We’re now in the end stages of creating our strategic plan for the coming years. As a part of that, we’re looking at the possibility of renaming and rebranding. The term ‘diabetes educator’ doesn’t describe what we do, and we see that in the research that went into the visioning process.

We’re working with a consulting firm to evaluate the situation, the Pros and Cons of it: What can we gain from changing the name? What could the name be? What challenges might appear as a result? We’re going to see about changing the name of ‘diabetes educators,’ but we’re looking at it carefully with the guidance of consultants. Along with that is examining the possibility of changing the name of AADE itself.

Wow! What kind of timeline are you looking at for this rebranding effort?

That’s obviously not something we would jump into too quickly. The rebranding can go either way – we can call ourselves something different than educators, but keep AADE potentially; or the other way around, or we might make changes in a staged process. There are definitely two pieces to this. We expect (the org’s name) evaluation to be a much quicker process, and we’re looking at this being a discussion between now and the AADE annual meeting in Houston in early August.

The plan is to have a good, solid answer by our annual meeting. It’s an exciting process, a lot to take into account, and that’s why we need a professional consultant to help us with this. By August, we’ll definitely be ready to get the word out on whatever we come up with.

Can you talk more about the work AADE’s done recently on peer support and the Diabetes Community online and offline?

That’s something we are proud of and have done really well. Our past presidents Deb Greenwood and Hope Warshaw deserve a lot of credit there, as they were key in bringing the peer support community in to work with, and it’s been an amazing collaboration. I can’t imagine where we would be right now without that connection.

There was the peer support summit* and a paper published on collaboration, they were a part of the visioning process, and that work continues. We’ll plan to have the peer support community meet with us at the AADE annual meeting, and they’re more generally being brought into the conversation on what we do. There are committees and different tasks, and so many points along the way that people with diabetes can come into the picture. We have to include the lens of the person with diabetes, to make effective and sensible decisions. There’s so much passion and energy and they give so much to the Diabetes Community, and I hope people with diabetes appreciate how much they offer us.

{*Note: DiabetesMine is involved in these AADE peer support efforts.}

Where does the new DANA platform on diabetes technology fit into all of this?

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Technology has to be such a huge part of what we do, in order to be effective as diabetes educators and as an organization. There are two big categories to that: 1) Pumps, CGM and other diabetes devices; and 2) Diabetes Care and Healthcare Models like telehealth and mobile health.

DANA was launched in August 2018, as a way for our members to learn about diabetes technology and it covers both of those areas. This is a members-only benefit (despite AADE sharing most things freely). It can serve as a quick, go-to hub for educators to learn about devices and apps, which for a busy provider or educator is so helpful, to have easy access to that information. Then there’s the whole education piece, keeping them up-to-date with webinars or courses. There is also a research aspect that touches on clinical trials and data from those studies related to diabetes care, which is nice to have those papers and reports housed in one spot. DANA also houses what was our “community of interest” in diabetes technology, with interactive conversations from the AADE listserv between our members on how they tackle technology. It’s been a great tool to keep up on all aspects of diabetes technology and education, and it’s ever-changing so we are fortunate that DANA was an idea that was supported and launched to help our members keep up on everything.

A recent study showed that less than 50% of kids and adults were actually meeting their diabetes outcome goals, despite all the advances we’ve seen. Where does D-education fit into that?

I think the under-utilization of diabetes education can’t help the situation. We need to do better. The more we get to work with people, the more opportunity we have to strategize and help people improve their care. We have the technology, tools and the medications, and people know the evidence on how exercise and healthier eating helps. But the statistics still show it’s a struggle. So for us, it’s about prioritizing what is most important for an individual and providing those strategies. What’s important to someone, or what challenges they’re facing, may not show up in an A1C – quality of life, other health parameters, access, and so on. All of the tools in the world are not sufficient for people to meet goals, without helping them access those tools and incorporate them into their life effectively. We need to be able to help those people.

Access and affordability is really the biggest issue of our time in diabetes care, isn’t it?

Yes, some of those things you just have to shake your head about. How can this be? How can someone pay a huge co-pay to see a diabetes educator, or not be able to afford insulin or technology? These things just baffle me. There is the issue of “non-medical switching” that AADE is addressing, and I am also glad the insulin pricing issue is being looked at the way it is right now. We need fixes on that immediately.

The referral process for diabetes education is part of that, too… who can or can’t refer us. Some of those barriers we need to burst through. We have to be able to meet with people when and where they need it, and we have a lot of work to do. It costs so much less money in the long-run to be able to get people with diabetes what they need to be healthy.

Last not least, do you think telehealth is helping improve access to diabetes education?

It’s nowhere near where it should be for diabetes care. We should be able to get on the computer and work with an individual, over the phone or on a computer from their home, and help them out – especially in rural and lower-income communities. We need access and we need it to be a reimbursable service!

Thank you for taking the time, Karen! We will watch with interest as AADE discusses the future of diabetes education, and wherever that takes us.