Helping Patients Take Charge of Their Care
Catherine Barnes, PhD, MA, MSN
Research Associate, Emory University School of Medicine
ADA Research Funding
Clinical Translational Research Award
Dealing with diabetes takes two-way communication. But in a health care system centered on solving immediate problems quickly, the conversation between doctor and patient is too often one-sided. "Doctors tell people, 'Here's what you need to do: this, this, this, and this,' " says Catherine Barnes, a researcher at Emory University School of Medicine. "Patients want that when it comes to medicine, but they don't want that when it comes to lifestyle changes."
Working at diabetes and primary care clinics at Grady Health System, a hospital in downtown Atlanta, Barnes constantly sees the disconnect between doctors' orders and daily life. Most of the clinic's patients are African American, a group disproportionately affected by diabetes; half of its clients make less than $10,000 a year. In the past, she's found that many of her patients were unfamiliar with diabetes care concepts like A1C levels and did not know what their cholesterol or blood pressure targets should be, let alone how to get there. Well-meaning instructions on how to stay healthy were often overwhelmed by the realities of daily life outside the clinic. "You walk out with a number, and you don't know what that means," Barnes says.
Care providers like Barnes have begun to realize that most of the hard work it takes to stay healthy happens outside of the doctor's office. "The choices that patients make each day as they care for diabetes have a greater impact on their outcomes than those made by health professionals," University of Michigan researchers Martha Funnell and Robert Anderson wrote in an influential 2004 Clinical Diabetes paper. "Once patients leave our offices, they are in control of which recommendations they implement or ignore." As Barnes explains, "the patient is the one who cares for their disease. They see a doctor for 10 minutes every three months, if they're lucky. They care for themselves 95 percent of the time."
To close the gap between doctors' orders and patient compliance, Anderson and Funnell advanced the concept of "patient empowerment." The idea is to make medical professionals and their patients collaborators. Doctors and diabetes educators bring information on diabetes and treatment options to the table; patients offer an understanding of the realities of their daily lives. The hope is that together they'll come up with a plan that works—and stick to it.
To empower people to care for themselves, Barnes looked for a way to make four basic measures of patient progress—blood pressure, fasting blood glucose, cholesterol, and A1C, a test of average blood glucose levels over time—easily understood.
The first step was a computer program that could quickly integrate test results into a personalized "Power Page" given to patients at every clinic visit. A single sheet showing all four measures, alongside the patient's goals, the Power Page functions as an up-to-date illustrated explanation of a person's progress.
For people whose numbers are out of control, there's an illustration of a straining weight lifter, symbolizing the stresses that out-of-control blood glucose levels, cholesterol, and blood pressure place on the body. There's also a simple handout that spells out some of the consequences of not keeping up with daily diabetes management: "Diabetes can cause blindness," for example, and "Diabetes ages your heart 15 years."
As people's results improve over time, the weight lifter's barbell gets higher and higher, until he's hoisting it overhead and grinning. The simple, clear graphics are a way to cut through the confusion many people feel about their diabetes, and help them take responsibility for their progress. "We're helping them visualize what the reaction of their body is to these markers," Barnes says. "They can see where they are, and where they need to go."
With the help of an American Diabetes Association grant, Barnes will spend the next two years investigating the effectiveness of her Power Page system. Eventually, she's hoping to sign up more than 400 people for the study. Half will get standard care at Grady's primary care clinic; the others will get Power Pages to update their progress at every visit. By tracking and comparing the progress the two groups make over time, Barnes will be able to measure whether empowering patients helps them better manage their diabetes.
So far, Barnes says, the response to the program has been enthusiastic. The clear language and illustrations help people understand what they're up against and how to tackle it. "They're thrilled—they understand it. No one's ever explained it before visually," Barnes says. "This brings it all together, and they can see it."
For people to make the changes necessary to control their diabetes, in other words, the solution isn't orders from on high. Instead, advocates of patient empowerment want to find a way to encourage people to take charge of their own care—and give them the tools to manage it successfully. "It's a whole paradigm shift from what's been done in the past," Barnes says. "It's the key to make them change."
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