Article from the Boston Globe’s On Call Magazine, October 2005

By Helen Osborne
President of Health Literacy Consulting

In an ideal clinical situation, health providers and patients always understand one another. But in reality, this is not necessarily the case. Patients may lack skills they need to understand unfamiliar medical words and complex health care concepts. Part of a healthcare professional’s responsibility is to help them understand. But where can you get the help you need to do that.

Through the years, I have learned a lot from working with teachers and literary specialists about how to communicate clearly and simply. We have shared knowledge about how people learn and applied it to the presentation of healthcare content people need to know. Together, we have come up with understandable ways to communicate. This month’s column focuses on literacy-related resources that health providers can use to communicate in ways that help patients understand.

NIFL

The National Institute for Literacy (NIFL) is an independent federal organization that is leading the effort toward a fully literate nation in the 21st century. According to NIFL, at least 40 million adults in America need to improve their literacy skills. This means that people need adequate reading, writing, and computational (math) skills in order to fully function at home, work, and in the community. To meet this goal, NIFL offers many literacy resources. Three of these have information specific to health:

LINCS, is a literacy information and communication system. It offers an online collection of adult education and literacy resources. LINCS includes online discussion groups, special collections of resources, literacy-related research and statistics, policy and legislation information, a calendar of events, grant and funding sources, and links to other literacy databases. The LINCS Web site is designed to be easy to use. It includes search capabilities, archives, hot sites, and a personalized feature called “My LINCS” which notifies you when there is new information in a subject area you are interested in.

LINCS Health & Literacy Special Collection is an online resource for teachers, students, health educators, and anyone interested in teaching health to people with limited literacy skills. Through this online resource you can find information about the link between literacy and health status, resources to provide basic health information in simple language, health curricula for literacy classes, and links to organizations dedicated to health and literacy education.

NIFL-Health is an online discussion group (or “listserv”) about health literacy. Subscribers can participate in NIFL-Health by asking and answering questions or simply reading what others have to say. There are currently more than 500 NIFL-Health subscribers. They include health professionals, literacy specialists, students, teachers, and researchers from around the world. I co-moderate NIFL-Health with a literacy specialist.

Through subscribing to this service, you can keep up-to-date on the topic of health literacy by discussing issues, sharing resources, and asking questions of experts. You can also access an archive of all the discussions and search them by topic, author, date, or thread. Topics vary widely. There have been practical discussions about how much white space to include in written materials or where to find easy-to-read and translated health information. There have also been philosophic discussions, including one about the value of assessing patients’ literacy skills. At times, there are also guest discussion leaders. Anne Fadiman was a guest who answered questions about her award-winning book, The Spirit Catches You and You Fall Down. An adult learner was another guest. He shared what it feels like to be a patient who cannot understand written health information.

NIFL-Health is just one of several online discussion groups sponsored by NIFL. Other groups include: Equipped for the Future, English as a Second Language, Family Literacy, Focus on Basics, Homelessness & Literacy, Learning Disabilities, Poverty, Race, & Literacy, Technology & Literacy, Women & Literacy, and Workplace Literacy. To find and subscribe to the group or groups that interest you. go to www.nifl.gov/lincs and click on “discussions.”

World Education

World Education in Boston is a nonprofit organization dedicated to improving the lives of the poor through economic and social development programs. World Education manages NIFL’s Health and Literacy Special Collection. It also publishes resources specific to health and literacy. These resources include the following.

Health and Literacy Compendium, developed by World Education in collaboration with NIFL, is an annotated bibliography of health materials appropriate for limited-literacy adults. It includes over 80 citations of print and Web-based materials. The Compendium includes health information that literacy specialists can use with students. It also includes literacy information and easy-to-read health materials that health professionals can use with patients. The Compendium contains information about

• links between health status and literacy status
• assessing and developing easy-to-read health education materials
• teaching health with literacy in mind
• teaching literacy using health content
• bibliographies and databases of easy-to-read or multilingual health information
• bibliographies and databases of connections between health and literacy.

Culture, Health, and Literacy: A Guide to Health Education Materials for Adults with Limited English Literacy Skills is an addendum to the Compendium. It includes health materials that address issues relevant to various cultural groups as well as materials available in other languages.

The National Adult Literacy Survey (NALS)

The US Department of Education commissioned a survey in 1992 of the literacy skills of English-speaking adults in the United States. Based on more than 26,000 interviews, this survey looked at people’s ability to comprehend prose (such as in newspapers and books), documents (such as maps and schedules), and quantitative (numeric) information. Results show that nearly half of the adults in the US have inadequate literacy skills. Not surprisingly, people who are older, disabled, have a poor education, or come from non-English speaking homes have an even higher percentage of difficulty. This data can help health professionals appreciate why so many patients have trouble comprehending health care information.

Adult Literacy in America is a detailed report about the NALS data. It not only defines literacy and describes the study, it also looks at survey data by age, level of education, race/ethnicity, disability or illness, region, sex, and the prison population. The report also looks at the connection between adult literacy skills and socioeconomic characteristics.

Literacy of Older Adults in America looks at NALS data specific to people 65 years and older. The report includes profiles for various subgroups of this population, and examines ways that literacy affects employment, civic participation, and economic status.

The State of Literacy in America, also based on NALS data, provides an estimate of how many adults have low literacy in each state, county, Congressional district, and large city in the United States. This data is a powerful way to raise awareness that issues involving literacy affect all of us, no matter where we live, work, or provide healthcare.

National Library of Medicine

The National Library of Medicine, Health Literacy Bibliography is a database of journal articles about health literacy. It includes 479 health literacy citations published between January 1990 and October 1999. While the bibliography is not intended to be all inclusive, it does provide an excellent way to begin a search for information.