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

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

When simplifying complex health information for consumers, writers need to make difficult choices that are as much about ethics as they are about nouns and verbs. For instance, the writer has to ask whether a document contains too much information, which can “overload” the readers, or too little, which means important facts the reader needs have been omitted. Is the tone appealing and respectful, or does it sound condescending? Are multivariate statistics simple enough for readers to understand yet complete enough so readers can make reasoned choices? Are the sources credible and unbiased? And, what is the best way to explain complicated medical concepts that even scientists and physicians disagree on?

Andrea Gwosdow, PhD, president of Gwosdow Associates and assistant clinical professor at Harvard Medical School, and I have been discussing the ethical concerns health communicators need to resolve. Gwosdow speaks to these issues as a scientist who is committed to providing adequate and appropriate data. I focus on individual learning needs (like literacy, language, or cultural concerns) and advocate for simplicity whenever possible. While our conversations sometimes raise more questions than answers, we both agree that ethical issues are important to consider. Here are some of our ideas, strategies, and suggestions for doing so.

What You Need to Know Before You Start to Write

As a writer, your job is to present information that is honest and complete, yet not overwhelming. This is a challenge, especially when you are working with information for which the language has been mandated such as legal documents like informed consent or government information like HIPAA regulations. If you cannot alter these documents, you can provide help to readers by writing easier-to-read summaries that you attach. My dentist, for example, has a one-page summary of HIPAA information stapled on top of the more complex regulations he needs to hand out.

Another potential problem that can be addressed with a preface is the fact that medical information is constantly changing and often even experts disagree about what is correct. For instance, should people eat a lot of high-fat protein foods or more low-fat grains. Ambiguity needs to be both acknowledged and addressed so your readers are not misled. One way do this is to preface information by stating that scientists continue to study and learn, indicating that what may seem correct today may change tomorrow.

It’s also important to remember that good writing takes a team. At a minimum, in addition to you as the writer, that team should include a subject-matter expert (usually a scientist or clinician) who can verify the accuracy of the material and at least one reader who understands and represents the intended audience. The expert’s and the reader’s opinions are equally important. Your job is to balance content, word choice, and graphics to satisfy the needs of both.

Before you start to write, don’t focus on just a few specific readers but learn as much as you can in general about your potential audience. That includes knowing what emotions and frame of mind the audience is likely to bring to the document owing to both the subject matter and the cultural context in which the document is likely to be read. Important items to consider are first languages of the potential readers, the cultures they come from, and the literacy levels for your local area. (You can find adult literacy estimates by state, county, congressional district, and city or town on the Web at www.casas.org/lit/litcode/Search.cfm).

Become aware of potential problems that particular words can cause readers. Despite the care you take choosing a “just right” word, patients may overlook or misunderstand its exact meaning. This can be particularly troublesome when talking about risk. For example, if you write that a new treatment “may” be effective, a prospective patient may assume (partly based on hope) that this means he or she will definitely get better. Also, the word “suggest” can easily be misinterpreted. Even though scientists know that the phrase “study data suggests” refers to preliminary data, lay readers can leap to the conclusion that the term indicates a higher level of proof. Qualifying words like “may,” “might,” and “could” need to be put into a clear context and potentially misleading terms need to be clarified. Your readers need to fully understand the risks they are taking.

Another problem with words involves the choice between unfamiliar, multi-syllabic medical words and simpler, more common lay terminology. A recent study found that patients often prefer medical terms. The reason is such terms validate the illness and sound less blaming than some more common terms. Just the other day, I heard someone say how relieved she was to be diagnosed with irritable bowel syndrome. Her last doctor, she felt, minimized her condition by simply saying she had a “sensitive stomach.” As writers, one way to meet the needs for both specificity and simplicity is by using the medical term with the simpler lay term put in parentheses beside it.

Numbers, especially very large ones, are another concern. Large numbers are hard for most people to comprehend. When talking about statistics, for example, it’s generally easier for people to understand “about 1 out of every 3 people” rather than “329 people out of 1,000.” Since people often prefer percentages, you can also add in parentheses (33%). It’s important, though, not to misrepresent the statistics. Three people out of a study involving ten subjects can be said to represent 30 per cent of the study. But that’s not the same thing as 300 people out of 1000. Graphics such as pie charts or bar graphs can also help make statistics clearer to a reader if they are designed carefully. For example, Gwosdow makes sure her tables are easy to read by having just two or three columns with the most pertinent information. In addition, she rounds-out numbers to no more than one decimal figure, such as “26.2”  instead of “26.215.”

Where information comes from is as important as how it is presented. To help readers make wise and informed decisions with the best data available, Gwosdow does her own literature search at the start of each project. As a rule, she goes to peer-reviewed journals rather than “grey literature” in which data has not been rigorously evaluated.

When You Write

Ethical dilemmas can arise at all stages of the writing process. Here are some steps Gwosdow and I take during the actual writing of material for a lay audience to help resolve difficult dilemmas:

1. Clarify goals. Decide what your readers need-to-know by being clear about what readers are expected to know, do, and feel as a result of reading  your document. Need-to-know information must be included. Additional information is called “nice-to-know.” That information can be deleted from your documents.
2. Include readers, early and often. Ideally, readers should help draft an outline and review text on an ongoing basis. Since this usually is not possible, ask at least a few readers to review and comment on your nearly-final version. Make sure you allow enough time to make changes based on their recommendations. After you make needed changes, ask readers to review your document again and confirm you didn’t add new problems.
3. Incorporate the principles of plain language. Use words people already know and define ones they must learn. Using plain language also means putting information into context with examples, stories, and analogies and formatting the document to be inviting and easy-to-read.

How to Find Out More

• Andrea Gwosdow is president of Gwosdow Associates and also assistant clinical professor at Harvard Medical School. To learn more, go to www.gwosdow.com or contact her directly by e-mail at andrea@gwosdow.com
• Helen Osborne is president of Health Literacy Consulting in Natick, MA. To learn more, go to www.healthliteracy.com or contact her directly at helen@healthliteracy.com
• Centre for Environmental Research and Training, University of Birmingham, “Risk Literacy and the Public,” http://www.doh.gov.uk/pointers.htm. Includes “Communicating about risks to public health: Pointers to good practice,” available in PDF format.
• Lipkus IM, Hollands JG (1999). “The visual communication of risk,” Journal of the National Cancer Institute monographs no. 25: 149 -163
• Ogden J et al, (2003). “What’s in a name? An experimental study of patients’ views of the impact and function of a diagnosis,” Family Practice, Vol. 20, No. 3: 248-253.