The Association of Diabetes Care and Education Specialists (ADCES) essentially leads the charge for diabetes education in the United States, with more than 12,000 members working “in the trenches” with millions of people with diabetes across the country.
Founded in 1973, the org has had to reinvent itself in recent years to keep up with changing times — in particular, the empowered patient movement that puts an emphasis on a patient-provider partnership approach to care.
We recently got the inside scoop from Chuck Macfarlane, who has served as CEO for the last 8 years, and just announced his departure in December 2020. (This triggered a nationwide search for his successor, who should be named by the time of the org’s annual meeting in August 2021.)
Under Macfarlane’s leadership, the organization has:
- launched a yearlong rebranding effort finalized in mid-2019 that changed the organization’s name and the name of the specialty from “certified diabetes educators” to “diabetes care and education specialists,” which better reflects their expertise and scope of work
- built a dedicated online diabetes technology hub for their members to keep up to date on sweeping changes in diabetes technology
- embraced patient-to-patient peer support as a core part of helping patients thrive
- actively advocated to offset the insulin affordability crisis so many patients deal with in this country
- as of 2020, worked to foster the explosion in telehealth and virtual diabetes care that also involves access and reimbursement issues
“This has been the pinnacle of my career,” Macfarlane told DiabetesMine.
Our team spoke with Macfarlane recently about where the diabetes care and education field is heading, and what he sees as priorities for his successor.
First off, what are your big takeaways from your time leading ADCES?
A lot has changed in diabetes, and our vision for the specialty really has allowed us to go back to the roots of where diabetes education and self-management started.
We’re not solely responding to environmental changes, but are striving to drive some of those changes to define what the specialty will look like in the future.
That reinforces… the focus on self-management and our members’ ability to engage with people, remembering that they are clinicians who bring a comprehensive ability to look at the totality of a person with diabetes.
They can provide that “clinical care as a bridge” to self-management, and that’s a real asset to those who have access to and engage with diabetes care and education specialists. That vision is one of the things I’m most proud of.
It seems ADCES is putting an emphasis on expanding collaboration with other groups?
Yes, I think that ability and willingness to collaborate has built trust. That includes working with industry players and others, like nurse practitioners, pharmacists, nutritionists, physician assistants (PAs), and family practitioners, who can refer people for diabetes care and education.
The joint consensus statement released in 2020 sends a message that we’re all on the same page and moving in the same direction.
That brings more people to the table, and we’re building on that with nurse practitioners and pharmacists to develop playbooks on personal and professional CGM. It’s that kind of work we need to be doing together, because we can’t just be operating in our own silos.
This is also a real opportunity for our members to raise their visibility by being an asset and instrumental part of the care team. By doing that, we can serve people with diabetes better.
How has the org responded to the pandemic-related telehealth trend?
As difficult as this pandemic has been, the explosion in telehealth — and the reimbursement tied to that — has certainly been one of the shining lights.
That use of telehealth makes so much sense. But it’s difficult for large governmental bodies like the Centers for Medicare & Medicaid Services (CMS) to embrace. They have to be cautious, I get it.
We’ve partnered with them, and I’m proud of the work we did with them in the early days of the pandemic, in opening the door to some revisions for telehealth coverage.
We were tenacious about them opening telehealth up to diabetes self-management training (DSMT) in general, and including registered nurses (RNs) and pharmacists who weren’t originally included and able to provide telehealth — which is amazing, because that’s half our members who provide education and care.
We had over 700 of our members submit letters to CMS to get these changes. We didn’t do that alone, but we like to think we were instrumental in helping implement that change.
It just makes sense, and allows us to meet people with diabetes where they are. That’s key in expanding this benefit.
How exactly has ADCES tackled ever-changing diabetes technology?
There’s certainly been an explosion in technology and a growing use of continuous glucose monitoring (CGM) and insulin pumps in the time I’ve been here.
I hope we’re working to build on that, to see greater numbers of people with diabetes being able to use these technologies and working to translate the data so they’re getting the best benefit.
Our embrace of technology has really grown over the past several years, especially as we introduced our DANA platform, our one-stop healthcare resource on diabetes technology launched in 2018.
We’re actively engaged in ongoing development of that resource, with thousands of our members registering to use it. We’re also working to train the broader workforce on diabetes tech, and so far opened it up to two groups: school nurses nationwide and endocrine PAs.
Our next challenge is deciding how to open danatech.org up even more broadly in 2021.
So far we’ve taken the professional association approach, but that’s hard because it’s always a secondary priority for those groups and their members, even if it’s free to use. We are looking at different avenues, maybe even opening it up widely to the entire community.
Getting medical professionals to embrace patient peer support has been tough. How has ADCES approached this?
I think we had a nice cordial relationship with the Diabetes Online Community (DOC) at the time I began in 2012, but we’ve really done some important work in the past several years to strengthen that relationship and work together to provide tools for diabetes educators to refer people to the online community.
We’ve worked directly with patient advocates and used surveys to gain insights.
There may have been an impression at one point that we were trying to change the name (from DOC to PSC, for Peer Support Communities), but that’s not the case. We were just trying to be inclusive of those who need peer support but aren’t online and choose different ways to engage.
Call it what you will, as long as it gets access to people who need it, that’s what is important.
[Disclosure: DiabetesMine Editor Amy Tenderich serves on the ADCES peer support workgroup committee.]
What is ADCES doing to address affordability and access?
Our members have been in the thick of these access and affordability conversations forever. They spend so much time advocating with insurance companies, third-party payers, and other providers to get access for people with diabetes — whether it be for insulin or diabetes devices and supplies.
That means the reimbursement, as well as helping people get the right device or medication they need (combating “nonmedical switching”). Our members are doing this work on a day-to-day basis, and we try to provide resources that can help them.
Overall, ADCES is not a huge advocacy organization in the ways that many others are. That said, we have participated and signed on to other activities and partnered with other groups, trying to support their efforts in this area.
We’ll continue to do so, but there are other organizations who can and should lead those efforts even as we are at the table.
How is ADCES addressing diversity and inclusivity?
We had the first meeting of our Inclusion Council on March 11, 2021. The group is charged with working with the board on exactly that issue of inclusion and diversity… along with expanding the specialty’s reach into underserved communities and continuing to reduce disparities of care.
These are all very expansive issues that we can’t solve on our own, but ADCES is looking at where we can uniquely be of assistance and develop action plans.
OK, so why leave now?
One of the reasons I’m leaving is that it’s just the right time to bring in fresh perspective and leadership, new ideas and skill sets.
We have a strong 2019-2023 strategic plan in place, so this will allow someone new to get acclimated for about a year before creating a new strategic plan to launch in 2024.
Organizations are dynamic and change over time, and I think I was the right person for the right time. But the organization could benefit now from some different thinking and new energy.
In your opinion, what still needs to be done?
There is a quote about access to diabetes care and education specialists that’s now famous: “7 is OK for an A1C, but 7 percent is not good for the Medicare access to diabetes care and education specialists.”
That refers to the fact that patients essentially have to be doing very poorly with their diabetes care in order to get a referral to see a DCES.
That’s really wrong, because people are engaging with their diabetes technology, their medications… without anyone to really help make sure they’re getting the full benefit.
This is the biggest challenge: making sure these clinicians are used most effectively in diabetes care and the healthcare system.
Thanks to Chuck Macfarlane for all he’s done through the years to elevate diabetes education!