This article is adapted from a speech Ms. Urbanski delivered in June 2024 as President, Health Care & Education, of the American Diabetes Association. She delivered her address at the Association’s 84th Scientific Sessions.
In the article, based on my June 2024 address as President, Health Care & Education, of the American Diabetes Association (ADA), I want to share some lessons I have learned and some thoughts on the importance of making diabetes education available for one and for all. I will begin by sharing some personal and patient stories from my career of more than 35 years in diabetes patient education. I will also review some of the available research and data about the effectiveness of diabetes education. Finally, I will offer some strategies to expand diabetes education in the setting where most people with diabetes receive care: primary care clinics.
So, let’s start with what I’ve learned about diabetes education. I think all of us are biased to some degree about diabetes education and how it should be offered. I am certainly biased because I have lived with type 1 diabetes for 45 years. I have been lucky and have had mostly positive experiences with the diabetes education and support I have received over the years. However, it is not lost on me that I have been fortunate because I grew up in a middle-income household with two parents who always had health insurance. I have been afforded the best diabetes care and education available.
I started kindergarten as a happy little kid in a small town of 6,000 people in Maine. I had a normal childhood and adolescence until I was a freshman in high school, when, after 2 months of the classic symptoms of type 1 diabetes, my parents and I finally figured out why I was always thirsty and making frequent trips to the bathroom: I had type 1 diabetes. My family’s general practice physician told my parents he did not know enough about diabetes to take care of me, so he referred us to a physician 20 miles away who had trained in Boston, MA, and spent some time at the Joslin Diabetes Center there.
I received a printed handout about the first ADA Diabetes Exchange Diet when I was discharged from the hospital. Two months later, at the insistence of this new doctor, my parents and I were on our way to Boston to spend a week in Joslin’s inpatient treatment unit. This was my first exposure to intensive diabetes education, which in 1978 was quite different from today. This experience helped us learn what we needed to know about urine testing, taking twice-daily injections of regular and NPH insulins, and following the Exchange Diet.
In high school, I proved to myself and others that I could do the things most important to me even with diabetes, including serving as drum major of my high school marching band. I attended Penn State, where I majored in nutrition. I then completed my dietetic internship at the University of Minnesota Hospital and Clinics.
After graduation, I went on to work as a pediatric dietitian at the University of Minnesota and then moved to northern Minnesota. I began my diabetes education career at St. Luke’s Hospital in Duluth. I then had the opportunity to work at the Duluth Family Medicine Residency Program. There, a clinical nurse specialist and I provided diabetes education to patients and worked with 30 family medicine residents to learn about managing diabetes. From the family practice center, I moved to the diabetes education program at the Min No Aya Win Clinic on the Fond du Lac Reservation in Cloquet, MN.
Finally, 7 years ago, I returned to Aspirus St. Luke’s, where I am the diabetes staff development coordinator and also work as a diabetes educator. I currently spend 3 days per week providing diabetes education at the internal medicine clinic, working with 16 providers, medical assistants, and six registered nurse (RN) care coordinators. All of these experiences, both personal and professional, have influenced my biases and approach to helping others learn how to live with diabetes. In the sections below, I will share some of those things I’ve learned.
1. Diabetes education works.
Those of us who provide patient education see this every day. But we also have important research evidence that diabetes education works. A 2020 meta-analysis by Bekele et al. (1) revealed that we typically see a mean A1C reduction of 0.6% when individuals with type 2 diabetes receive diabetes self-management education and support (DSMES). This is impressive when we think about the A1C reduction reported with diabetes medications, especially if we factor in the average cost of diabetes education compared with medication costs.
The Academy of Nutrition and Dietetics’ most recent evidence review of the effectiveness of diabetes medical nutrition therapy (MNT) found an A1C reduction between 0.3 and 2% at 3 months with ongoing improvement in A1C for 1 year or more, as long as ongoing support was provided (2). And, as noted in the ADA’s Standards of Care in Diabetes—2024, DSMES is also associated with improved quality of life, reduced all-cause mortality risk, positive coping behaviors, and lower health care costs (3).
For diabetes programs to bill Medicare and other payers for reimbursement of education services, they must first go through a recognition, or certification, process. The ADA’s Education Recognition Program (ERP) certifies diabetes education programs.
Figure 1 summarizes 2023 data from ADA-recognized diabetes education programs. It shows that 75% of participants in these programs decreased their A1C, by 1.4% on average (American Diabetes Association Education Recognition Program, unpublished observations). Sixty-one percent of participants decreased their number of emergency room visits, and 64% had a decrease in hospital admissions. Finally, 66% of participants decreased their body weight.
2023 National benchmark data from ADA-recognized diabetes education programs. ER, emergency room.
2023 National benchmark data from ADA-recognized diabetes education programs. ER, emergency room.
Furthermore, we know when people with diabetes are most likely to need DSMES. A 2020 consensus report of the ADA, the Association of Diabetes Care & Education Specialists (ADCES), the Academy of Nutrition and Dietetics, the American Academy of Family Practice, the American Academy of PAs, the American Association of Nurse Practitioners, and the American Pharmacists Association recommended that DSMES be offered at four critical times, including 1) the time of diagnosis, 2) annually and/or when individuals are not meeting treatment targets, 3) when complicating factors develop, and 4) when transitions in life and care occur (4).
2. Most people with diabetes want to do well, and providers want to provide excellent diabetes care.
Here is a case study to illustrate this lesson. Rita is a 77-year-old woman who first came to see me 5 years ago. When we were first visiting, she made it clear that she understood her 8.8% A1C was higher than ideal but that there was little she was willing to do to improve it. She told me, “I eat like crap, and I cannot exercise because the neuropathy in my feet is so painful.” She ate two meals per day, which included a large early-afternoon lunch usually eaten away from home with friends. She did not monitor her blood glucose, and she stated at that first appointment, “I will never do insulin injections.”
Rita is now using continuous glucose monitoring (CGM) and taking insulin two to three times daily. Figure 2 shows her most recent ambulatory glucose profile (AGP) report. These changes did not happen overnight, but they did happen after she had ongoing appointments, during which we evaluated her glucose levels, first with professional CGM studies. After a couple of professional CGM studies, when viewing her AGP report, she said, “I need to do something differently to improve my glucose.”
Rita started making changes in what she ate, but after a couple more professional CGM studies, she said to me, “I don’t think this is working. I think I might need to start insulin.” She started on once-daily insulin glargine, and again, after another professional CGM study, she said, “My glucose levels go so high after I eat lunch. I need to start mealtime insulin.”
She is now taking long-acting insulin and one to two injections of mealtime insulin as needed based on her food intake. She is also using a personal CGM system and has an A1C of 7.2%. I didn’t do anything magical when meeting with Rita; I simply encouraged her to come back for follow-up appointments, and we continued to talk about what changes she could make in her diabetes management plan. I offered her tools to better assess how her diabetes plan was working and let her decide what she was willing to do.
I also know that health care professionals want to provide good diabetes care to their patients. The Duluth Family Medicine Residency Program, where I worked earlier in my career, was the first residency program in the United States to have an ADA-recognized diabetes education program. This residency program provided the 30 family medicine residents the opportunity to learn about diabetes management from faculty and from our diabetes education staff, in addition to offering a diabetes education rotation. After graduation, these primary care providers (PCPs) became diabetes champions because they had had seen firsthand the difference that diabetes education can make in the lives of patients.
3. Everyone with diabetes can learn what they need to know to live successfully with diabetes, if we meet them where they are.
Another case study will illustrate this lesson. Wendy was 26 years old and worked as a stock clerk at a big-box store when I met her. She had lived with type 1 diabetes for 10 years by the time she was referred to me by her PCP. Wendy wanted to start using an insulin pump, but the PCP wasn’t sure this would be possible because she had learning challenges, including limited reading and math skills.
Wendy and I met, and we worked on her ability to calculate mealtime insulin doses, including estimating her carbohydrate intake and using an insulin-to-carbohydrate ratio. It soon became clear to me that she could not handle this level of math, and this was back in the days before we had smart pumps that could calculate mealtime insulin doses. However, Wendy was highly motivated and really wanted to use an insulin pump. She met with an endocrinologist, and the endocrinologist and I decided she had the ability to learn how to program her pump, place an infusion set, and dose her mealtime insulin. I developed her mealtime insulin doses based on mutually defined small-, medium-, and large-sized meals and gave her a detailed, written insulin correction scale to use at mealtimes along with her usual mealtime doses.
After a year of working together, I left that diabetes program and didn’t see Wendy for 3 years until she came to the clinic where I was working. We met and decided to make some changes to her insulin dosing plan. When I asked if she had her insulin plan in writing, she told me she did. But her face turned red when I asked if I could see it. She pulled out a sheet of paper that was torn in half, along the creased fold at the center of the paper. The sheet was water-washed and obviously well used (Figure 3).
The sheet Wendy pulled out of her backpack that day was the same sheet I had given her almost 4 years earlier! She told me, “I knew I could take the right insulin doses with my pump as long as I had things written down to follow.” Indeed, she had maintained an A1C of ∼7.5% on her insulin pump, using the simplified instructions we had worked out for her. I think I learned as much from Wendy on that day as she ever learned from me.
Wendy helped me learn that, if we present the information they need in a way they can understand, our patients can learn what they need to know. We also must remember that people want to learn in an environment where they feel comfortable and accepted and from people who look like them and with whom they can relate.
4. Diabetes education works in primary care.
Patients who see me in their usual primary care clinic tell me daily that they like to come to a clinic where they know the parking, know the building, and know the staff.
We have evidence that diabetes education improves outcomes, and we know the burden on PCPs to manage chronic conditions such as diabetes is huge. We diabetes educators are perfectly poised to see patients in the environment in which they feel comfortable, and we can help clinicians and their staff manage the needs of their patients who have diabetes. A physician said to me recently, “I tell my patients that I cannot help them manage their diabetes without your help.” We have many examples of programs that are successfully integrating diabetes education into primary care settings. I’d like to highlight just three of those programs here.
The University of Washington diabetes education program in Seattle has had an initiative since 2014 to expand diabetes education services in their primary care clinics. They now have five dietitians who are also diabetes educators and work in the primary care clinics. As they worked to expand their services, they quickly recognized that, to improve the care provided to people with diabetes, they needed to have medication adjustment protocols that both they and the clinic care management nurses could use. They also developed a staff diabetes education training program they called a “diabetes boot camp” to increase the diabetes knowledge of the care management nurses. They next implemented a 6-hour patient diabetes curriculum, taught by their dietitian diabetes educators and care management nurses. This curriculum resulted in a mean 1.1% improvement in A1C among patients who attended the program. Since the start of this initiative, the number of diabetes education visits has increased by 548%, to more than 800 visits per year.
Prisma Health, in Greenville, SC, is the largest private, nonprofit health care system in the state, serving patients within a radius of ∼200 miles. Ten years ago, Prisma had four RN and registered dietitian (RD) diabetes educators, along with one supervisor. With a goal of expanding their education services, this team worked on projects to make it easier for clinicians to refer patients for diabetes education. These included creating a button within their electronic health record system to take clinicians directly to the diabetes education referral template. With an intentional effort to expand their services into multiple hospital outpatient locations, primary care rural health clinics, and residency programs, including an Obstetrics and Gynecology Center, their program currently offers DSMES in 18 sites. Their staff now includes 27 members, including 25 educators. While many diabetes education programs are closing across the country, this program has had at least 2% growth every year. It continues to receive requests to provide diabetes education services to new sites within the Prisma system, while also expanding services to community sites outside of the health system. The program’s number of visits has increased from 1,800 in 2013 to more than 8,500 visits in 2023. The demand for diabetes education is there, if we can offer flexible services to meet the needs of clinics and health care systems.
Now, I want to offer a few highlights of the diabetes education program where I work at Aspirus St. Luke’s. We have a staff of six diabetes educators who are also RDs. Over the past 7 years, we have expanded our service locations to include six of our seven primary care clinics, where we offer diabetes education and MNT from 1 day per month in some locations to up to 3 days per week in others. At the internal medicine clinic where I spend 3 days per week, I work side by side with the clinicians, pharmacist, RN care coordinators, and medical assistants. I see patients, serve as a diabetes management resource to clinicians, and help the care coordinators and medical assistants with diabetes prescriptions and supply orders. As a result of these efforts, the number of patient diabetes education visits in this clinic has increased by 59% over the past 3 years, and I have enough referrals that I could spend 5 days per week at this clinic if I were able.
Advice From the Managers of These Three Programs
The managers of the three programs highlighted above provided valuable insights. Having a PCP champion is crucial, they said, and services must be clinician-driven. Once PCPs understand what diabetes educators can do to help them improve diabetes care, they will refer patients for these services. Educators must appreciate the primary care landscape and understand its challenges. The best way for educators to learn this is to be embedded within primary care clinics and to see these challenges firsthand.
We diabetes educators need to be flexible and open-minded. In April, I moved my internal medicine clinic education room for the fifth time in 3 years because of changing space needs at the clinic. I’m happy to say that, when our PCPs heard I might be asked to move out of the clinic, they made some noise and let it be known that they wanted diabetes education services within their clinic walls—not in the building next door.
All three of the education programs I described today reported the need to offer further diabetes education and training for primary care clinic staff to improve both the quality of care provided to patients and health outcomes. This focus has led the ADA to recognize that there are initiatives that we, as individuals and as an association, can take on to improve diabetes care.
So, What Can Each of Us Do?
Diabetes educators need to be ready to move out of our comfort zone and think about changes we can make to meet patients where they are. These don’t have to be big changes in the beginning. Maybe it could be starting a conversation with PCP diabetes champions to assess their interest in having a diabetes educator in their clinic once a month. Perhaps it starts with offering a single diabetes class or even a cooking demonstration at a primary care clinic.
It doesn’t stop with educators, though. I encourage clinicians to consider what having a diabetes educator in your clinic setting could add to your practice. Share your ideas with your clinic managers and administrators. Request a meeting between your nurse care coordinators and the diabetes education team to share ideas about how they can work together to improve the care and services offered to patients. I also urge individuals in administrative positions to talk to your clinicians to explore how diabetes education services could be offered at your clinics.
Making changes like these takes knowledge about diabetes program expansion and billing for services in alternate settings. Such change may also require expanding the skills of diabetes educators to practice at the top of their professional licenses. The ADA recognizes this and has plans to help meet these needs.
Dr. Kevin Peterson, the ADA’s Vice President of Primary Care, is working on several initiatives to expand diabetes education in primary care. Although we have evidence that DSMES improves A1C and patient outcomes, a 2011 study using a national payer database found that only 4% of Medicare beneficiaries who had diabetes received DSMES services (5).
A more recent study published by Mendez et al. (6) at the Centers for Disease Control and Prevention included an analysis of 2017 and 2018 data from insured and uninsured adults from 43 states. The authors reported that only 52% of respondents with diabetes had received diabetes education, and this included all types of diabetes education provided by any type of provider. Those who had participated in diabetes education had a higher predicted probability of following diabetes-related self-care practices.
As previously mentioned, diabetes education programs must be certified by an accrediting organization to bill Medicare for their services. Both the ADA and the ADCES are accrediting organizations. The ADA’s ERP currently has 1,300 recognized programs with almost 3,700 sites at which education is offered. The number of programs has decreased over the past several years, whereas education sites have increased. This change is likely a good thing, indicating that existing programs are doing more and offering their services in a wider variety of sites. However, continued program closures is concerning.
Most diabetes education programs report that they have no-show rates of 50% and capacity for increased referrals. Most report that their services are offered in an outpatient hospital or endocrinology setting rather than in primary care settings. Increasing the demand for diabetes education is needed to sustain existing programs. More importantly, every person who has diabetes deserves the opportunity to learn how to take care of this complicated, life-changing disease.
The ERP completed a survey of education programs in the spring of 2024, with more than 700 diabetes care and education specialists participating (American Diabetes Association Education Recognition Program, unpublished observations). The survey revealed that 60% of the programs receive referrals from primary care, and 83% are willing to see patients in primary care. Educators also reported needing help with educating clinicians about the benefits of DSMES and how to access such services. In addition, respondents indicated that embedding educators within primary care teams and making education services readily available will help to improve patient access and engagement in diabetes education services.
The ADA has several initiatives to expand diabetes education into primary care. It plans to survey PCPs and people with diabetes to learn more about the needs of those living with diabetes and those providing diabetes care. Surveying individuals with diabetes will help us better understand their challenges in attending diabetes education sessions, as well as what measures are needed to build their trust.
In early 2024, the ERP also established a Physician Subcommittee to learn more about the diabetes education referral practices of health care professionals, with the goal of developing a diabetes education referral toolkit for providers.
We need to learn more about attendance rates for telehealth appointments and how telehealth is affecting the landscape of diabetes education. The Veterans Health Administration has well-established diabetes education programs with high attendance rates. The ADA hopes to learn more about how its programs operate and how its strategies might help other diabetes education programs. The ADA also recognizes that there is an opportunity to offer basic diabetes education and training to primary care office staff, including RN care coordinators and medical assistants, to help them better understand diabetes management.
The time is now. We need to collect and disseminate information from successful programs to learn best practices and offer programming assistance to help existing education programs expand their services into primary care.
The ADA also has some related longer-term goals. It will continue to work on advocacy issues, including improving reimbursement for DSMES and MNT services and expanding the list of professionals who can refer patients. Forming an advisory group that includes individuals with diabetes, diabetes educators, referring health care professionals, and representatives of other diabetes education organizations such as the Certification Board for Diabetes Care and Education will provide ongoing insights into the needs and best practices for providing critical diabetes education in the primary care setting. From there, implementation tools can be made available to expand diabetes education services.
Every person with diabetes deserves the opportunity to participate in diabetes education to learn how to manage this condition. I feel fortunate that I have been able to spend my career helping individuals learn and live more successfully with diabetes. I truly believe that every one of us who works in diabetes care has the ability to make a positive change in the life of someone with diabetes. If one person reading this article decides to do something differently to offer diabetes education in a more meaningful, effective way, I will consider my efforts a success. Thank you for reading and, more importantly, thank you for caring about those of us who have diabetes.
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I want to formally thank those who have helped me along the road to becoming the ADA’s President, Health Care & Education. First, to my diabetes educator colleagues, especially those I have worked with in the Academy of Nutrition and Dietetics’ Diabetes Dietetic Practice Group (formerly the Diabetes Care and Education Practice Group), as well as a very special group of the leading diabetes education experts who were part of an industry-sponsored North American Diabetes Education Board. You have all helped me become the diabetes and dietetics professional I am today.
I also wish to acknowledge my colleagues at Aspirus St. Luke’s, in the clinical nutrition and diabetes care department, the endocrinology clinic, and the internal medicine clinic. You have always supported me in my efforts to be involved in diabetes-related projects outside of work, and I sincerely thank you.
I also want to thank my family. My parents, who were both teachers, raised four children to value education and involvement in the endeavors that matter to us. Thanks also to my siblings, who have more than once rearranged family get-togethers because of my diabetes-related meetings and commitments. Finally, thanks to my husband, Tom, for tirelessly supporting every diabetes committee, meeting, and project I wanted to be part of; for adding fun to my life in countless ways; and for providing enduring support to help me take care of myself and my diabetes.
