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“When people know you, they trust you,” says Blanch Thomas, a resident of Memphis, Tennessee. Blanch is living with diabetes and has worked in health care for over 40 years. Her efforts as a patient navigator led her to join the Patient Advisory Council (PAC) guiding a team from the University of Tennessee Health Science Center researching diabetes self-management.

Their PCORI-supported program, the Management of Diabetes in Everyday Life (MODEL) Study, aims to improve self-management of diabetes, diabetes control, and quality of life by recognizing what Blanch alludes to: people will trust most that which they understand, and those who make them feel understood.

Thirteen percent of African American adults in the United States have diabetes, and in the Mid-South, more than 80% of people who are living with diabetes are also living with at least one other chronic condition, such as hypertension. Managing diabetes “can be a lot of work,” explains Ruthie Tate, an educator and grandmother to 11. “If you’re not careful, you can develop a lot of complications."

The Positive Impact of Stakeholder Engagement in the MODEL Study

Ruthie has experienced vision challenges requiring laser eye surgery as a complication of diabetes, but, she explains, being in community with other people living with diabetes “has helped me to do better.” After a long career in special education, Ruthie is now working as a substitute teacher, and has been a MODEL PAC member since 2014.

Under the guidance of PAC members living with diabetes like Blanch and Ruthie, the MODEL team developed a study to see which methods of support would work best to help patients manage their diabetes. The study reached out to African American adults with uncontrolled diabetes and offered them access to new services through their doctors’ offices. Some participants received encouraging text messages, some were given print educational material on self-management of diabetes, and a third group participated in regular health coaching sessions, in person and by phone.

The ongoing COVID-19 pandemic forced many people indoors at home for long periods of time and shed light on long-existing inequities and inconveniences in access to health care.

As a result of the pandemic, virtual communications with healthcare teams and support networks have become more commonplace. But years before the onset of COVID outbreaks across the globe, the team of patient-centered researchers behind the MODEL Study had already begun to examine how to meet people where they are—even remotely—in order to better manage their diabetes.

At the end of the study, around 90% of the participants in each group continued to participate in the program. Participants in the text message group received text messages daily or every other day for an entire year, and yet there were very few dropouts.

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"There's extensive literature showing that tailored messages have excellent uptake," explains the MODEL Study’s Principal Investigator, James Bailey, MD, MPH. The more a message is designed to meet the needs of a specific recipient, the more impact it can have compared to a blanket message written the same for all recipients.

In order to provide truly tailored messaging, the project team relied on the expert advice of their patient advisors, like Blanch and Ruthie.

While working with community members, says Blanch, “I had to let them know that I had experienced some of the same dilemmas that they did.”

By talking about her own health, she was able to connect with peers living with diabetes on a more personal level. “You have to make people feel comfortable. Sometimes doctors can intimidate. They’re not trying to, but they're talking from where they are. You have to meet people where they are to help them.”

“I didn’t have any hidden agenda,” says Blanch, explaining her ability to connect with community members. “My agenda was to see them be well and happy.”

'The Proof is In the Pudding'

An approach to support self-management of diabetes centered around personal connection and tailored communication proved effective through the MODEL Study's use of texting and health coaching over the phone. "We tried [different] things,” says Blanch. “We didn’t just come up with an answer overnight…we talked about things that might work.”

“The proof is in the pudding,” adds Bailey, who goes by Jim. “Just getting these texts from their doctors’ offices really helped change behaviors.” Participants reported notable increases in healthy eating and physical activity during the study. The research team also saw significant improvements in hemoglobin A1c levels, which measure a person’s average blood sugar reading over a 3-month period.

Jim was selected to join a 2022 PCORI Annual Meeting panel on using telehealth to fight health disparities to further share these illuminating results.

"Whenever we'd call and follow up with the patient, they'd be so happy someone would talk to them," shared Blanch. "When they get a text message, they love it."

Jim agrees: "Patients especially liked getting text messages that were encouraging and motivational." The design of the messages was patient-focused; patients chose how frequently they wanted to receive texts and their main health goal; the messages could focus on improving diet, exercise, or medication adherence. Participants had the option to change their preferences three months into the study, but most stuck with what they’d originally chosen.

Travel to a clinic or doctor’s office may not always be necessary for quality health care, but what is more necessary, as shown by this study, is human interaction built with humans in mind. “When you use patient-centered design, it’s no surprise that the patients like the results,” explains Jim. “When patients help to design interventions, it’s much more likely that those interventions will be successful.”

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This is clearly demonstrated in the 90% retention rate across all arms of the study, despite the socioeconomic disadvantages that have historically affected the community served and their care.

The PAC played an important role in educating the study team on what the community wanted and needed. Ruthie explains how important it was to give space for patients to “ask questions of their own,” so that they would be more receptive to the program’s text message, coaching, and educational interventions.

This study has important implications not only for diabetes self-management, but for any number of conditions which would be managed at least partially remotely.

“People really benefit from interaction with their doctors’ offices, with other workers in the healing professions, and with family and friends,” says Jim. “But there’s also evidence that simple messages from a trusted source are listened to and appreciated.”

Even more so since the start of the COVID-19 pandemic, explains Jim, “lots of people have felt the effects of isolation on mental health.” But this study is just further evidence that remote options can make a difference “across the spectrum of behavioral health,” says Jim. “Services for health habits related to chronic illnesses can be provided quite effectively remotely.”

“In many cases,” Jim adds, “patients prefer remote delivery because of the convenience. People are busy, and travel can be expensive and hard.” Blanch adds, “Many times, when you’re ill, it can lead to [social] isolation;” that’s why texting is a “wonderful” option for outreach.

"Given the recent pandemic," says Jim, "we need to embrace the opportunities to provide evidence-based care through telehealth."

'You Can Still Have a Full and a Good Life Living with Diabetes'

However, this patient-centered study did not seek to put greater distance between people by facilitating remote participation. To the contrary, the study showed how vital it is to facilitate connection across barriers, whether through a friendly text message from a doctor’s office, or in the hustle and bustle of a community health fair.

Truly an educator at heart, Ruthie explained how the health fairs—community convenings organized by the MODEL Study team—provided vital outreach in the form of accessible education. By “spreading the word” at these fairs, shares Ruthie, the team saw an “outpouring of community involvement.”

Either before or after someone becomes a diabetic, Ruthie has observed, “if you don’t talk about it and educate about it, they don’t have any idea how to help themselves and others.” Information on preventing or managing diabetes would really “kick in” when presented in a community setting by doctors and fellow community members, Ruthie explains—and this sort of education has encouraged Ruthie herself “to live a healthy life.”

“One of the most important lessons we’ve learned from the experience is how important patient expertise is,” shares Jim, reflecting that even the study’s interventions were selected by the PAC. Messages of support designed to meet the needs of the community, as defined by the community members themselves, show just how far individualized and accessible communication can go.

Patients’ participation in the MODEL Study, shares Ruthie, helped spread a message: "You can still have a full life and a good life living with diabetes."

"I think if we just take the time and listen and not judge people, we can help people know that they are important," says Blanch. Whether by text message, a phone call, or a health fair, she and her fellow PAC members wanted their community to know: "We care about you."