Article from the Boston Globe’s On Call Magazine, October 2004

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

October 2004 marks the fifth anniversary of Health Literacy Month. Health literacy has grown tremendously over the past five years, evolving from a concept that few were aware of to an issue of worldwide attention and action.

Health literacy is often defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” To me, health literacy goes beyond individual capacity and is a responsibility shared by patients and providers to communicate in ways the other can understand.

Communicating health information is more difficult today than ever. In part, this is because providers must educate patients about complicated diagnostic information, multistep discharge instructions, and ambiguous and ever-changing research findings. Communication is also difficult because patients bring individual learning needs such as limited literacy or language skills, cultural differences, age-related physical and cognitive changes, disabilities, and emotions that affect listening, learning, and remembering. Added to these difficulties, health communication often happens under less-than-ideal circumstances, as when providers are rushed or patients are scared, sick, or in pain.

Communicating health information effectively is also more important than ever before. Patients today are asked to make life-changing decisions about treatment and care. They are also expected to accurately follow all medical instructions, regardless of how complicated or technical these instructions may be. The consequences are high when people do not understand and can result in poorer health outcomes, dissatisfaction, and medical errors.

Worldwide Concern

Worldwide, health literacy is a concern. The Institute of Medicine (based in the United States) says in its 2004 report Health Literacy: A Prescription to End Confusion that “Nearly half of all American adults — 90 million people — have difficulty understanding and acting upon health information.” The World Health Organization, at its 2001 World Assembly, stated that “Improved health literacy is necessary for people to increase control over their health and for better management of disease and risk. Communications strategies that increase access to information and build the capacity to use it can improve health literacy, decision-making, risk perception and assessment, and lead to informed action of individuals, communities, and organizations.”

Policy makers, patients, and providers all share an interest in and commitment to health literacy. In honor of Health Literacy Month 2004, I asked several healthcare professionals why health literacy matters. Here is what they said:

Beth Lown, MD, Harvard Medical School and Mt. Auburn Hospital in Boston, Massachusetts, and president of the American Academy on Physician and Patient

“Lack of health literacy can be an incredible barrier. We know it results in poor health outcomes and it is a source of shame for patients. It disempowers patients and makes it difficult for them to participate in their own health and care when they are unable to read, comprehend, or put into action instructions and agreed-upon plans.”

Timothy G. Kamau, national coordinator, Kenya Literacy Decade Network, Nairobi, Kenya

“Health literacy, which is yet to take ground in Kenya and Africa in general, would help the masses keep abreast with the fast changing medical arena. With the exception of a few elites, the following pertinent health issues apply to all parts of the country:

• There are language and communication breakdowns because doctors are trained in English yet most of their clients are non-English users, or do not know English, a language of the elites so to speak.
• Medicine labels are in foreign languages and not in the national language, Kiswahili or vernaculars.
• Illiteracy levels are high, thus the need to communicate health information to the masses using mass or folk media and in vernaculars.”

Suzanne Morrison, adult literacies worker (health) at the Health and Literacy in the GNP Project in Aberdeen, Scotland

“The Great Northern Partnership (GNP) area of Aberdeen City is classed as an area of social and economic deprivation. The area has a high proportion of people unemployed and reliant on benefits, a high incidence of regular non-attendance at school, and a high number of people with long-term illness or disability. Local health staff notice a link between low literacy skills and poor health:

• Young mothers are unable to read and understand written instructions for making up formula milk.
• People take the wrong dose of medicine because they cannot read prescription instructions.
• People find signs in health centers and hospitals confusing.”

Elsie Petch, community health promoter, Toronto, Ontario, Canada

“We are a richly multicultural city. Health literacy, clear language and design, including use of color, are all particularly important in developing accessible health and related information for newcomers who are not fluent in the dominant language.”

Taryn Pittman, RN, MSN, patient education specialist at Massachusetts General Hospital in Boston, Massachusetts

“It is imperative that healthcare providers become aware of health literacy and change their written and verbal communication style to one of ‘plain language’ so that patients will be better able to understand and manage their health. Health literacy has to do with patient safety and better health outcomes. It is documented in the literature that patients with low literacy have:

•  A difficult time following treatment regimens
• Higher rates of return visits to the hospital
• More difficulty managing chronic health conditions such as asthma, diabetes and hypertension.”

Health and Literacy Professionals Respond

In response to concerns like those above, individuals and organizations around the world are addressing health literacy and finding ways to communicate health information more effectively. They are doing this in such ways as:

• Writing easy-to-read health materials and testing them with intended readers
• Offering workshops and symposia that not only raise health-literacy awareness but also introduce skills for improved communication
• Forming health-literacy coalitions and committees that bring together health providers, literacy professionals, and community members
• Helping patients and their families or caregivers speak up, ask questions, and confirm that they truly understand health information

You, too, can make a difference. As a health provider, make sure you communicate in ways your patients can understand. This may be in writing, by talking, or in other ways such as drawing pictures, telling stories, or using objects and models. As a colleague or department manager, let others know why health literacy matters. You can do this by adding health literacy to your meeting agenda or helping a colleague write a patient-education brochure in plain language. As a patient, family member, friend, neighbor, or caregiver, make sure to confirm that you understand health information and encourage others to do likewise. Whatever your role, let the world know why health literacy matters.

How to Find Out More

Here are some resources you can use to learn more about the issue of health literacy and how to address it.

• Doak CC, Doak LG, Root JH, 1996.Teaching Patients With Low Literacy Skills, 2nd ed. Philadelphia, PA: J.B. Lippincott Company.
• Guysborough Antigonish Strait Health Literacy Network, www.nald.ca/healthliteracystfx
• Health Literacy Month at www.healthliteracymonth.org
• Healthy People 2010. Available at www.healthypeople.gov.
• Massachusetts General Hospital, Treadway Library, Health Literacy Resources Web site at www.mgh.harvard.edu/library/default.asp?page=plain_language
• Nielsen-Bohlman L, Panzer AM, Kindig DA (ed) 2004. Health Literacy: A Prescription to End Confusion. Institute of Medicine, Washington, DC: The National Academies Press.
• Osborne H 2004. Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. Sudbury, MA: Jones and Bartlett Publishers.
• World Health Organization, Fifty-fourth World Health Assembly, 30 March 2001. Available at www.who.int/gb/EB_WHA/PDF/WHA54/ea548.pdf