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

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

Patients and their families may find just as many reasons to go to the Internet as to the doctor or the pharmacy. They might, for example, want to research symptoms or learn more about a new diagnosis or prescription. But the Web sites that patients and families visit may be complicated, confusing, or otherwise not “patient-friendly.”

Cindy Lollar is helping to change that. She is Web editor for the clinical-trials portal of the National Cancer Institute’s (NCI) award-winning Web site, cancer.gov “Web writing is different than print writing,” she says. But with years of experience in online science communication, Lollar knows how to create Web sites that are easy to navigate and easy to learn from. Here are some tips and strategies she recently shared for making Web sites patient-friendly.

Organize from the users’ perspective. Web sites for patients, families, and the general public need to be organized from the users’ — not the sponsoring organization’s — perspective. At one time, NCI’s home page was primarily organized by departments or programs, such as the Division of Cancer Prevention and Physician’s Data Query (a database of cancer information). While people already familiar with NCI could get around the site, this design model was not helpful to users visiting for the first time.

NCI surveyed its Web users and analyzed the list of words most commonly entered in the search box. They found that a majority of users were looking for information on specific types of cancer. To better meet their needs, the home page now prominently displays links to type-specific pages so patients and their families can quickly find the information they seek.

Use words and terms that users know. Lollar is a strong proponent of plain language. This means using common one- and two-syllable words that most people already know. It also means defining or, if possible, avoiding medical jargon — words, terms, and acronyms that are familiar only to those within the profession. Since it is sometimes hard to recognize your own jargon, Lollar suggests that health professionals pretend they are a patient when reading explanatory text. “Be conscious and that jargon will leap out,” she says.

There are times, however, when more complicated medical words are needed. Lollar considers these “teachable moments” and uses the opportunity to clearly explain important words and terms. For example, she might explain “metastasis” as “cancer that has spread.”

Draw attention to key points. Lollar says that most Web users scan text rather than read it word for word. Also, they come to health Web sites with a specific question in mind and want to quickly find the answer. Good design can help users do this easily, especially when it adheres to the following guidelines:

• Headings and subheadings. Often written in bold or different and larger-sized font, headings and subheadings act as road signs to direct users where to go. On the site that Lollar edits, for example, subheadings include “Learning About Clinical Trials” and “Finding Clinical Trials.” Lollar says that headings should be worded in ways that make the content they lead to clear. Overly cute or clever headings may needlessly confuse the user.
• Bullet points. Divide lengthy text into manageable “nuggets” by using bullet points.
• Colors. Use bright or contrasting colors for headings and hypertext links. Red or blue are commonly used for these purposes. But you should also include other graphics (such as symbols) to make these items recognizable for users who may be colorblind or otherwise visually impaired.
• Word count. Lollar suggests using a minimal amount of words on most pages. Often, this is about half the number of words you might use in print. But when there are lengthy materials that cannot or should not be shortened, format them so users can easily print the pages instead of having to read them onscreen.

Make navigation easy. Frequent Web users are accustomed to certain conventions that help them navigate from page to page. These conventions include a navigation bar (like a table of contents) which is often a clickable list on the left or tabs along the top.

People also expect information to be presented and labeled in familiar ways. These include “About Us” and “Contact Us” pages. The “About Us” page is a place where users can check the source and credibility of information on the site. It should include names and credentials of key people within the organization. The “Contact Us” page should have contact information for the sponsoring organization and its Web editor.

Make the site accessible. This means consider the needs of people with disabilities as well as of those with older computers or slower connections. Here are some ways to create a more accessible site:

• Use simple graphics (photographs, illustrations, and diagrams). Complex graphics, says Lollar, can frustrate users when it takes too long to download a site or go from page to page.
• Offer a text-only version. This is helpful not only for people who want to speed up the performance of their computer but also for those who use screen readers that read aloud information on the monitor.
• “Test-drive” your Web site on a medium- to low-functioning machine. One way to do this is by going online at a public library to see how well your Web site works.

Re-do. “The beauty and the beast of Web sites is that they are constantly evolving,” says Lollar. Users’ needs are evolving, as well. Web sites, unlike print materials, can be easily changed. But too many changes all at once can add to confusion. Lollar recommends making small changes as needed with larger “re-dos” only once every year or two.

Before you invest in making major changes, find out what your users really need and want. The best way to learn this is through surveys, questionnaires, or other types of feedback in which users can confirm (or not) that your Web site is indeed patient-friendly.

How to Find Out More:

Cindy Lollar is editor of the National Cancer Institute’s clinical-trials portal at www.cancer.gov/clinicaltrials. She can be reached by email at lollarc@mail.nih.gov

Online resources to help make your site patient-friendly:

• Jakob Nielsen on Web usability, www.useit.com/
• “Making Your Web Site Senior Friendly,” from the National Institute on Aging and the National Library of Medicine, www.nih.gov/icd/od/ocpl/resources/wag/documents/checklist.pdf
• “How to Evaluate Health Information on the Internet: Questions and Answers,” from the National Cancer Institute, cis.nci.nih.gov/fact/2_10.htm
• “Guidelines & Checklists” page, from Usability.gov, a Department of Health and Human Services Web site, usability.gov/guides/index.html