More than three decades ago, Dr. Robert Needlman decided if he was going to improve the health outcomes of his patients he was going to have to fight illiteracy.
“There is an association between racial disadvantage and low literacy and poor health outcomes,” said Needlman, now a pediatric physician at MetroHealth in Cleveland.
It was a nexus at which he thought he could intervene.
In 1989, Needlman, then a fellow at Boston City Hospital, started Reach Out and Read, a nonprofit that encourages literacy among young children by incorporating reading aloud into pediatric care, out of the trunk of his car.
At first, he put books in the waiting rooms of pediatric clinics, then decided they should be brought into the doctor’s visits themselves.
Today, the group is now in 37 outpatient clinics across Northeast, Ohio and serves 4.2 million young children in the U.S. In 2021 alone, Reach Out and Read books were distributed in over 36,000 well-child visits, according to the group.
The connection between low literacy and poor health outcomes
“From the very beginning, the argument was, 'Why should a doctor care about literacy?'” said Needlman.
People with limited literacy skills can struggle to follow medication instructions, communicate with healthcare providers and attain health information, said Needlman. All of which, can damage their health. And lower literacy propagates economic disadvantage and that can cause a snowball effect, he said.
“If you're not successful in your literacy and education in general, for the most part, your income is lower,” Needlman said. “When your income is lower. all sorts of things get bad. Your housing gets bad. Your food choices get bad. Your neighborhood gets bad. And, all of those things affect your health.”
“When you look across the board, there is a really strong connection between literacy and health. And, also there is a very strong connection between literacy and social marginalization,” said Needlman.
“From an ethnicity [or] race point of view, whites as a group do better than African Americans as a group, as it turns out do better than Latinos[or] Hispanic people," he said. The reasons are complicated. But Needlman said there’s no question American society has disparities in education built into it.
"From Reach Out and Read’s perspective," he said, "they are built in at a very early age.”
Research shows it’s not just individual patients who pay the price. Medical errors, increased illness and disability, loss of wages and compromised public health related to low health literacy costs the U.S. economy up to $236 billion, according to the Center for Health Care Strategies, a think tank that studies health care outcomes for people on Medicaid.
The group defines health literacy as the skills necessary for an individual to participate in the health care system and maintain good health. That includes reading and writing, calculating numbers, communicating with health care professionals and using health technology.
In Cleveland, some neighborhoods have been assessed to have adult illiteracy rates over 90%, according to Seeds of Literacy, a Cleveland-based non-profit organization that provides free basic education and GED preparation to adults. In Hough, a neighborhood on the East Side, 95% of residents struggle to read.
What it’s like to look after your health when you have low literacy levels
A couple of years ago, Mr. Johnson, a 78-year-old Cleveland resident, told a neighbor that his reading wasn’t good and asked for advice. The neighbor pointed him to the nearest library who in turn directed him to Seeds of Literacy.
While he was attending Seeds, Johnson, who we're identifying by his last name only because he’s afraid of being taken advantage of, encountered some health concerns and was presented with medical information that he couldn’t understand. He met with the doctor and they went over the results, but what was going on just wasn’t clear to him.
When he didn’t understand the information from his doctor, he brought it to Seeds, hoping they could help him.
“I have had multiple students bring to us forms they may have received from the doctor or forms they have to fill out that can be difficult to understand, not just pertaining to healthcare,” said Kara Krawiec, a site coordinator at Seeds of Literacy.
It’s common for students to bring in documents, she said, especially with the medical jargon. “It’s just difficult to decipher.”
For help, Krawiec turned to Seeds’ volunteers, including some Case Western Reserve University (CWRU) medical students. When Krawiec told them about Johnson, their professor got on a Zoom call with him to help him understand the health information.
“They’ve been real good at helping me understand,” said Johnson.
Low literacy can sow doubt in patients interacting with the medical system. Johnson said he’s felt disregarded and disrespected during medical appointments. He said he’s been denied access to care for being perceived as a “reluctant patient.”
He wonders if a note was added to his medical history after he tried to return a CPAP machine that he said was sent to him even though the one he had worked fine.
“Ever since I turned that CPAP machine in, every doctor I’ve talked to or dealt with, and they find my record, is acting funny, and I don’t know why,” he said. “I don’t know what’s going on. I really don’t.”
Dr. Carmine Stewart, vice president of programming at Seeds of Literacy, said they get a lot of students with stories like Johnson's.
“It’s a misconception that people who are low literate don’t advocate for their health. They do, it’s just that they can’t advocate fully because they don’t understand the written information,” Stewart said. Johnson is “very active and proactive about his health.”
Often, students who struggle to manage their health say they do not feel they are being heard, said Krawiec.
“They feel like they are not being heard even though they are telling their doctors, ‘This is what I’m experiencing. This is what’s happening,” she said.
The importance of reading early
Although Reach Out and Read, the nonprofit started in the trunk of a medical resident’s car, is a literacy group, its mission begins and ends with health, said Lynn Foran, the executive director of Reach Out and Read Greater Cleveland.
The key to helping young children develop literacy skills is to meet parents where they’re already going — the doctor's office, she explained.
For a typical child, there are a total of 14 pediatric well-child visits, Foran said. Reach Out and Read starts between doctor and family at birth — then focuses on the 10 well-child visits that occur between six months and five years of age. At six months, the pediatrician introduces a book to the parent.
“Providers can learn so much about what’s going on with the child, motor skills, relationship, language… that helps them do their job,” Foran said.
Foran explains that this approach also helps parents understand how they can be their child’s first teacher. “Helping kids get ready for more developed language, in turn, helps to build the child’s brain,” she said.
Reading to a child promotes increased brain development and cognition, said Needlman, the group’s founder.
“It is one of the most powerful things a parent can do to help their children be successful,” he said. “Research shows being read to is good for children.”
It increases a child's vocabulary and, when they read better, they behave better, according to Needlman. He points to research that parents who started reading to their children at a young age report less harsh discipline at age five and a decrease in “acting out” behavior, which leads to a decrease in disciplinary actions taken.
That can reduce the potential for a traumatic experience as well as stress in children and increases health, he said.
“Lots of stress-related illnesses are found in children too,” said Needlman.
A child’s exposure to adverse experiences can create toxic stress - which affects healthy early brain and childhood development and is linked to health problems like asthma, poor growth and frequent infections, Foran said.
Toxic stress disrupts early brain development as well as child development, causing children to have inadequate coping skills and can lead to disparities in school readiness, she said. But “positive child experiences can mitigate adverse childhood experiences,” she added.
Being read to is a positive childhood experience.
“Being introduced to the world of books and ideas in a positive joyful way, having the time and the space to explore the world of books and ideas, in some way, is a fundamental human right. It’s right up there with food, shelter and safety from violence,” said Needlman.
“Research shows child families who participate in the Reach Out and Read program attend well-child visits far often [and] immunization rates are high,” said Foran.
Many children eventually come to look forward to the visits because of the books, she said.
Needlman said he views the work of Reach Out and Read as an opportunity to help right some historical wrongs.
“In the very old days, African Americans weren't allowed to read,” he said, referring to laws passed in the American South before the Civil War that made it illegal to teach an enslaved person to read. “That was a way in which fundamental acts of humanity were being denied from people in a most egregious, nightmarish way. In a small way, Reach Out and Read, is an act of social justice.”