What is the best way to get … and keep … diabetic patients actively engaged in the lifelong self-management of their condition?

The individual or institution that comes up with a definitive answer to that question will surely be remembered in the history books in the same manner as Jonas Salk. After all, diabetes is a pervasive condition of epidemic proportions in much of the world. According to the latest statistics from the National Institutes of Health, 25.8 million Americans have diabetes … roughly 8.3 percent of the nation’s population. Additionally, another 79 million American adults are estimated to have prediabetes, putting them at high risk for developing the condition.

Keenly aware of the toll diabetes takes on the body, healthcare providers routinely talk to patients about the threat of comorbid conditions ranging from heart disease, stroke and kidney disease to blindness and amputation. Yet, there is often a disconnect from what a patient seemingly hears and understands in the office and what transpires on a daily basis.

“We talk about diabetes all day long with patients, but they have to go about their business of living with the disease,” noted Elizabeth S. Halprin, MD, associate director of Adult Diabetes at Joslin Diabetes Center, an affiliate of Harvard Medical School.

A recent study conducted by Joslin researchers looked at obstacles present among patients with poorly controlled diabetes. Halprin, a board certified endocrinologist and instructor at Harvard Medical School, said the reasons for poor management vary hugely and are specific to individuals and their own personal circumstances. Are there financial issues that make office visits cost prohibitive? What about transportation or geographic barriers that make it difficult to get to an appointment? Perhaps an individual is working multiple jobs or caring for everyone else in the family with little time left over to address their own needs.

Halprin said the study also revealed some interesting perceptions about the healthcare system and providers. “They find the whole healthcare system impersonal,” she said of the study participants. “They think we’re not listening and that we suggest things that aren’t practical.”

To a physician, telling a patient to ‘increase physical activity’ seems like a highly appropriate, straightforward step toward better diabetes management. To a patient who struggles financially, a gym membership is out of the question and strolling through an unsafe neighborhood could be more dangerous than the disease, itself.

“Diabetes is a very time consuming disease to have, but it’s also a very time consuming disease to treat,” Halprin pointed out. “The healthcare system doesn’t always permit the time for exploring and looking at each person’s individual needs.”

To address that, Joslin is investigating the addition of care coordinators to work with high-risk patients. The coordinator becomes the point person who initiates a follow-up call after an appointment to see if the patient understood recommendations and to make sure prescriptions are being filled. The coordinator might also reach out to remind the patient when it is time for their diabetic eye or foot exam. This is the individual who is more likely to know about medication assistance programs, area outlets for safe activity, and other resources to overcome obstacles.

Although the concept isn’t novel in healthcare, it is one that has been difficult to fund under the current payment system. Changes in reimbursement models, such as the patient-centered medical home, make it more feasible to add a care coordinator to the team approach, which typically includes physicians, nurse practitioners, nutritionists, exercise physiologists, registered nurses, psychiatrists and diabetes educators. Through a joint project with Beth Israel Deaconess Medical Center, Joslin has launched the Diabetes Practice Liaison Program to share collaborative strategies with primary care providers and their office staff in the region.

Just as one provider doesn’t hold all the answers, it’s unlikely one approach will meet everyone’s needs.

Halprin pointed to another study among Joslin’s older patients that had encouraging outcomes. “A highly structured education program with specific tasks and cognitive behavior strategies resulted in better A1c control, which was maintained for at least a year,” she noted of the intervention that worked well with older patients up to age 75. However, she continued, that program didn’t show the same promise among middle-aged patients.

Race and ethnicity are also important variables in how information is received, perceived and acted upon. Joslin has initiatives for Asian, African-American and Latino patients that take into account social and cultural traditions. Considering the risk of diagnosed diabetes in comparison to non-Hispanic whites is 18 percent higher among Asian Americans, 66 percent higher among Latinos, and 77 percent higher among non-Hispanic blacks, reaching these specific populations in a meaningful way is critical.

Halprin, a member of Joslin’s Latino Diabetes Initiative, noted there is a support group that meets regularly at the diabetes center to knit and chat. A staff psychologist joins the group to guide conversation and answer questions.

“They bring food so that’s an opportunity to discuss what is a good choice or a not-so-good choice,” Halprin said. “Nutrition is a huge part of diabetes care, but it’s also a huge part of the Latino culture,” she noted, adding nutritionists on staff try to make suggestions that are culturally appealing or that revamp traditional meals to lighten the carbohydrate load.

Additionally, education classes are conducted in Spanish and materials have been translated. Providers with the Latino program also are piloting group medical visits with four-eight participants. These efforts are aimed at making the healthcare clinic less intimidating and more welcoming of natural conversation and questions about living with diabetes.

In fact, Joslin hosts a number of programs in a group setting including DO IT, a four-day intensive outpatient program for those who have gotten off track with their self-management; Why WAIT, a combined weight reduction and management program with a focus on nutrition, physical activity and behavioral support; and interactive games like CarbChallenge where participants test their knowledge of carbohydrate-containing foods.

“Diabetes can be a very isolating condition,” Halprin said. “It’s good for people to be in a group and know other people are struggling with similar issues.”

By working collaboratively, utilizing diverse technologies and education offerings, and leveraging the theories embedded in new reimbursement models, the hope is patients and providers will work together to overcome the obstacles to effective diabetes self-management.