Article from the Boston Globe’s On Call Magazine, October 2002

By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting

October is Health Literacy Month. It affords an excellent opportunity for healthcare professionals not only to raise awareness of both the public and professionals about issues of health literacy but also to form partnerships with other agencies to help patients and their families develop the literacy skills they need for good health.

Health literacy, as defined by the National Library of Medicine, is “the degree to which individuals have the capacity to obtain, process, and understand basic health information.” To take care of their health and the health of their family, patients have to be able to perform such tasks as making and keeping medical appointments, following self-care instructions, filling out insurance forms, understanding informed consent documents, and keeping track of their medicines. Unfortunately, many patients lack the literacy or language skills they need to accomplish these tasks. To help patients participate actively in treatment and care, health providers and healthcare organizations must communicate medical information clearly and simply — in print, in person, and over the phone. Doing so is not always easy.

One problem is health providers are “subject-matter experts” — they know the medical information that patients need to learn, but they are not literacy experts and do not necessarily know how to communicate complex information in clear and simple ways. That’s where health-literacy partnerships, a combining of efforts from both healthcare providers and literacy experts, can help. When health and literacy programs form partnerships, they build on both areas of expertise. Professionals in both fields can work together to provide information that patients need and to develop teaching methods that can help all patients — regardless of literacy or language ability — learn.

A Successful Partnership

The Health Education Literacy Program (HELP) is an example of a health-literacy partnership that works. Lauren Schwartz, MPH, a community health educator at the Poison Control Center in New York, designed a medication safety educational program with Diane Rosenthal,  then-director of What Works Literacy Partnership at Literacy Partners Inc. During a year-long collaboration, they

• developed six easy-to-read brochures about medicine safety
• field-tested the brochures with adult literacy students
• developed a companion curriculum to be used in adult literacy classes
• trained volunteer tutors to teach medicine safety
• translated the brochures into Spanish, Chinese, Haitian Creole, and Russian

The HELP program not only achieved all its goals, but also helped Schwartz and Rosenthal appreciate the value of working together. Drawing on their experience, they offer some useful strategies you can use to form a health-literacy partnership in your own community.

Define what you want to do. Schwartz had a clear vision for what she wanted to accomplish with HELP. She not only wanted to write easy-to-read brochures for people in New York City, she wanted to create a health education program that literacy agencies across the country could use. Rosenthal, too, had a vision. She wanted to provide a valuable educational experience, one based on real needs, for adult students in literacy programs, many of whom need to deal with personal healthcare concerns while they are learning to read. With medication safety as a shared goal, Schwartz and Rosenthal designed a project and acquired funding to make their visions come true.

Find the right person to work with. Schwartz and Rosenthal did not know each other when this project began. Schwartz actively sought a literacy specialist to work with because she quickly realized that the project needed more than just her healthcare expertise. She found a literacy partner who shared a common goal. In this case, they were both interested in medication safety — Schwartz from a public health perspective and Rosenthal from a literacy perspective.

Get to know each other. In collaborations such as this, each partner has to learn about the other person’s work. There must be mutual respect, and neither partner can feel that his or her profession is any more important than the other. Take the time to learn about each other’s profession, including nuances and workplace jargon. Rosenthal, for example, taught Schwartz about the difference between “literacy teachers” (who’re paid) and “literacy tutors” (unpaid volunteers). And Schwartz taught Rosenthal about designing reliable evaluation instruments.

Secure organizational commitment. Make sure that people at all levels of your organization support the project. Schwartz and Rosenthal asked for “buy in” from top administrators who would allocate resources, staff, volunteers who would implement programs, and literacy students who would be asked to participate in focus groups and research studies.

Make sure that senior administrators free up one “point person” to work on the project from start to finish. If someone new is always involved, say Schwartz and Rosenthal, your project is unlikely to be successful. Anticipate, too, that large projects often take more time and are more complicated than you initially expect. As Schwartz and Rosenthal both acknowledge, there were times when it felt as if HELP “consumed our lives.”

Elicit feedback and be willing to make changes. The literacy students in this project were full partners, not simply “study subjects.” They provided a perspective that Schwartz and Rosenthal needed to have. One way the students participated was by critiquing drafts of the brochures. Many students commented that the people illustrated in the brochures looked “kind of stern.” They also said they preferred to see people in groups, not alone. Using this feedback, Schwartz and Rosenthal replaced the illustrations with pictures of more active people in group settings. The students were delighted to see how their opinions made a difference.

Establish goals and measure progress. Identify the goals of your project and determine how you will measure progress. In HELP, Schwartz and Rosenthal used pre- and post-tests to obtain objective data about changes in students’ knowledge. They also used focus groups and surveys to get subjective information about the development of the brochures, the training session, and the implementation of the program. With these measurements, they could see the positive impact that HELP was having on the students’ knowledge about medication safety and the tutors’ feelings about using the material.

Build on your success. Schwartz and Rosenthal are rightfully proud of their accomplishments as health-literacy partners. While each invested a lot of time and energy in HELP, they both gained the knowledge, experience, and confidence they now use to teach people across the country about medication safety. They also are strong proponents of collaboration. “People should do this,” say Schwartz and Rosenthal. “We did it, we continue to do it, and we want to do more.”

October is Health Literacy Month  — a grass-roots initiative to raise awareness about the need for understandable health information. This month, get to know potential health and literacy partners in your community. Working together, you can make a difference. Visit the Health Literacy Month Web site at www.healthliteracymonth.com for more information.

How to Find Out More

Diane Rosenthal is now the executive director at Literacy Volunteers Stamford/Greenwich Inc. You can contact her by e-mail at dianerlva@aol.com

Lauren Schwartz, MPH, is a community health educator at the New York City  Poison Control Center. You can contact her by e-mail at dsa212@nyu.edu

Printed and Web Resources

• Doak C, Doak L, and Root J (1996). Teaching Patients with Low Literacy Skills. J.B.Lippincott Company, Philadelphia.
• The Health & Literacy Special Collection Web site, sponsored by the National Institute for Literacy and World Education. www.worlded.org/us/health/lincs