July 25, 2019
By Robin L. Flanigan
Debbie Wise saw one doctor and then another for chronic pain in her joints.
She was referred for tests and prescribed medication, but the doctors used medical lingo she couldn’t understand. So she stopped showing up for appointments, and ultimately quit taking the medication—even though one of the theories for what she had was lupus, a complex autoimmune disease.
“I didn’t know what was going on,” she says. “I wanted to run away from what they were talking about.”
Then Wise—owner of Majestic Hair Design in Irondequoit—participated in a new health literacy training program developed by Common Ground Health with support from MVP Health Care.
Held for four hours over two days, the program taught participants how to comprehend health information, ask good questions, manage medication and, as a result, become better advocates for good health care. The program was offered to barbers and hair stylists who have been trained as community health educators through Get It Done, an initiative of Common Ground and Trillium Health. The community health educators share health information, take blood pressures and encourage clients to see their doctors if the readings are higher than normal.
Shortly after completing the program, Wise went back to her primary care physician when she began feeling fatigued for no reason, and her left pinky went limp. When she was told to see a specialist, she did.
“Everything made more sense,” explains Wise. She learned she had systemic lupus erythematosus, the most common form of the disease. “I want to tear up just thinking about it, because I didn’t feel like they were talking in circles anymore. I knew exactly what to ask”—she gives more than a handful of examples, including Is this hereditary? and What types of medication are best?
This time, she points out, “I understood what was being said.”
Policy analysts say there is a national need for health literacy. People with low health literacy use more medical services, have a greater risk for hospitalization, and require more expensive services such as emergency care and inpatient admissions.
According to the report “Low Health Literacy: Implications for National Health Policy,” from George Washington University’s Milken Institute School of Public Health, the cost of low health literacy to the U.S. economy could be as high as $238 billion annually.
In the Rochester region, “we are where the rest of the country is,” says Common Ground’s Phyllis Jackson, who developed the health literacy curriculum. “We have a lot of people who are not literate when it comes to their health, especially where there are high rates of health disparities and inequity.”
Vulnerable populations include minorities, older adults, immigrants and low-income residents.
Jackson, a registered nurse, created the program after years of fielding requests from people who had gone to their doctor for a symptom or injury, yet wanted a second opinion.
“I’d say, ‘Did you say this? Did you ask that?’ The answer was usually no,” she says. “Over time I realized we need to be doing more.”
Jackson said for too long health care providers have been the target of health literacy campaigns, which “gives power to the providers and very little power to the patients.”
The health literacy program is evolving, as Jackson adds to the curriculum ways to combat issues of comprehension and cultural stigma. She plans to expand the program to churches in August and is looking to spread the word in other ways, such as having people taught in their primary language.
Another idea is to give patients diaries to record doctor visits for easier—and more thorough—record-keeping. The diary has space for required lab work, test results, symptoms and other important information that would increase the chances of receiving the best care possible.
“My goal for teaching health literacy is to enable people to make informed choices in managing their care,” Jackson says. “We don’t have to like those choices, but everybody has the right to make their own.”
For Wise, life is much different these days. Now that she regularly takes her medication and follows up with her physician, her inflammation episodes don’t last as long—and she knows to control her stress levels, which can cause a flare-up.
“I’m learning how to manage my life,” she says. “Being educated about your health works.”