The Pinellas County 4-H Health Literacy Mapping Team

"Many people in my community aren't healthy because they just aren't health literate," according to Artrese Reid, a Harlem high school student active with the Truce Fitness and Nutrition Center in New York City.

Reid and her group of Harlem youth "health mappers" canvassed over seven square miles of her neighborhood by foot for almost two months, and came up with a number of barriers to good health care: Several health clinics in their community are located on side streets and people don't know about them. Smaller pharmacies sometimes don't have enough staff on hand to explain prescription information and answer other health-related questions. And there are few doctors' offices located in the area.

"My community members aren't getting the healthcare they need," concluded one of Reid's peers, Alexis Tripp, at a September presentation hosted by the Institute of Medicine and the Academy for Educational Development in Washington, D.C.

"Lots of people go into doctors' offices and wait for over two hours to be seen," added Wadleigh High School student Todd Holland, another teen participant in the Harlem program.

Reid, Tripp and Holland were part of a group of 40 teens—approximately 20 from Harlem and 20 from Pinellas County, Florida—that braved blazing temperatures this past summer to garner some preliminary information from health clinics, hospitals and pharmacies on their respective communities' health needs and awareness.

Supporting Youth Mappers

The Institute of Medicine reports that 90 million Americans suffer from poor health literacy, meaning that they cannot understand what they're being told about their health well enough to make good decisions about medications, appointments, consent forms and treatments. "Poor health literacy has been associated with higher health care costs and with the growing disparities in U.S. health care," according to the organization.

This year organizers with the Institute decided to partner with the Academy for Educational Development to get young people involved in accounting for and helping solve the problem. The Institute, through a Kellogg Foundation grant, provided approximately $35,000 to two youth-focused sites, including the Harlem Truce Fitness and Nutrition Center and the Pinellas County 4-H. The locations were chosen because of their experience with using young people to conduct community health mapping.

Teens at each site were hired for about 6 weeks at approximately $6.50 per hour to conduct surveys and interviews surrounding health literacy in their locales. Over 300 individuals were interviewed in central Florida alone.

"I think that the youth have a different approach—they're able to get the issue highlighted in a way that adults can't," says Beth Tobias, an adult coordinator with the Pinellas 4-H group.

Meeting the Challenges

Before the youth began mapping their communities, the Academy provided them with training in interviewing techniques and survey development. Most students didn't initially know what health literacy was, explains Anthony George, 18, a student at Bayard Rustin High School for the Humanities in New York.

"It was shocking to learn how this problem can affect my own family—my grandma is always complaining about her aches and pains and medication," says George. "As a result of my research, she became more motivated to talk to her doctors about her prescriptions."

After the training process, teens at both sites decided what data they wanted to collect and from which sources. Their goal was to assess if health information was at an appropriate reading level, if brochures and other health literature were visible and understandable, if the individuals they interviewed (pharmacists, physicians, and others) were familiar with health literacy issues, and if the individuals they came in contact with were professional.

Even with the training, the task wasn't always easy. Besides the heat, it was sometimes difficult to get adults to take their work seriously.

"At the smaller pharmacies, there often was one staff person who was overburdened as it was," explains Ray Figueroa, an adult coordinator with the Harlem site. "When young people came in to ask important questions, it wasn't always easy for them to be heard."

For Takia West, 15, a student at St. Petersburg High School in Pinellas County, the most challenging part of the process was learning how to talk to people that she didn't know. "If you held back what you wanted to ask, you couldn't get good data," she observes. She was also surprised by how many people she encountered who didn't know anything about health literacy.

Comparing & Contrasting Results

The Pinellas County youth mapping team surveyed a total of 90 organizations, including 36 pharmacies, 48 medical clinics and 6 hospitals. They found that more than two-thirds of the organizations reported serious or very serious health literacy problems among people who seek medical help. Nearly one-third of the organizations reported that they didn't do any testing to see if their medical literature was written at a level their audience could understand. And almost one-third failed to provide printed materials in languages other than English.

West, who wants to one day become a forensic scientist, also says that some of the health materials offered by such organizations could be made clearer by simply enlarging the font size used and by being more concise, depending on the audience.

Teens in Harlem found that their community offers a solid program for financial literacy—a storefront where residents can receive tax and bank information. However, they didn't find any such agency dedicated to helping residents understand medical information. In addition, several teens reported that some pharmacists need to incorporate better "customer skills" to help residents feel more comfortable.

The Harlem students carried their project a step further by comparing the number of doctor's offices in a 25-block strip in their urban community to a section of New York City's affluent Upper East Side. In their own community, they found no offices, while they counted 119 in the more affluent area.

"It made me feel confused, upset and angry," reflects George. "There's so much need in communities like Harlem, and the government and other health officials need to recognize it."

Going Forward

Officials with both the Institute and Academy hope to continue youth mapping work with the Pinellas 4-H group, the Harlem Truce Fitness and Nutrition Center and additional locations next summer.

"This data is critical to understanding what can be done," according to the Academy's Executive Vice President William Smith, who organized this year's youth mapping program. "It's scary to see how important this issue is to people and yet how little attention it is getting at the community level."

Tobias wants to ensure that the information uncovered by the teens will be shared among community organizations to help improve health literacy in the immediate future. "We want to help highlight resources in the community by disseminating this preliminary information, and maybe even collecting more data," she explains.

Figueroa indicates that teens involved with the Harlem program support the idea of training more local residents to work in pharmacies to help community members understand health information. "Community liaisons could be a big benefit where pharmacists have trouble speaking clearly," he says.

"This experience showed me that there are lots of ways to make the situation better," says George, who plans on entering college next fall. "At first, I wasn't really interested in health issues, but now, after working with this project, I feel motivated—I'm eager to learn and eager to make a difference."

Resources:

• Truce Fitness & Nutrition Center
• Pinellas County 4-H Youth As Resources
• Institute of Medicine
• Academy for Educational Development

Rob Capriccioso is a former staff writer for Connect for Kids.