Other rheumatologists have jumped from DVDs to more interactive patient education on the Internet. “We have stopped using DVDs in our office because much of our patient education is now Web or computer based,” says Eric S. Schned, MD, a rheumatologist at the Park Nicollet Clinic in Minneapolis, Minn., and a member of The Rheumatologist’s editorial board. “I store educational materials on my laptop and print them out for the patient during the exam. My colleagues and I have organized our own departmental Web page from which I print disease, medication, laboratory, exercise, and other information pieces. I also download pages from other Web sites. We keep a significant amount of printed materials in our hallways and on bulletin boards in the exam rooms that patients may read and take home.
“When I’m with a patient in the exam room, I will pull up an image that I want to demonstrate, such as a picture showing a joint with synovitis, and turn the laptop around so they can see the screen,” adds Dr. Schned. “All of our imaging is now online, so I’m also able to pull up the patient’s X-rays and MRI or bone scans so that they can see their own results.”
I think it is still important for patients, especially older ones, to be able to hold something tangible in their hands that they can read and mull over.
Regardless of the format, these rheumatologists agree that education materials must reinforce what the physician discusses with the patient. “Since patients are generally too anxious in the office to truly comprehend what was said,” notes Dr. Docken, “I like to point out the items that are relevant on the fact sheet, so that they can review the information when they get home.”
This is especially important when delivering a new diagnosis or prescribing a medication with many potential side effects, because the patient may be upset or distracted and may not remember the conversation later.
“At the end of the day, though,” says Dr. Docken, “there is nothing that trumps interacting and communicating with someone who is sitting three feet away from you.”
Your New Colleague, Dr. Internet
Quickly disappearing are the days when patients looked to their physicians as their only or primary source for education. Now, consumers increasingly turn to the Internet for health information.
In fact, the number of U.S. adults who go online to look for this information has increased to about 136 million – a 16% increase since 2005, according to a nationwide Harris Poll released August 2006. These individuals represent 80% of all adults who go online, up substantially from 72% the previous year.
Physicians find that, although they are still captains of their ship when it comes to educating patients about their diseases and treatment plans, they are fast becoming navigators as well. They have to guide patients to credible online destinations for health information so that they don’t float adrift on the Internet sea of information.
“I work under the assumption, now, that people are going to be browsing for health information,” says Eric M. Ruderman, MD, associate professor of medicine in the rheumatology division at Northwestern University Feinberg School of Medicine (Ill.).
Dr. Docken concurs: “This is how medicine is today, and we have to help patients navigate their way through all of this information. Otherwise, patients will just Google their diagnosis and then they are ‘off to the races’ with thousands of Web sites to choose from.”
About 85 million Americans who gather health advice online don’t consistently examine the quality indicators, such as source and date, of the information they find, according to a survey by the Pew Internet and American Life Project. Physicians need to proactively monitor and direct their patients to credible Web sites, especially those bearing the “HONcode,” (a promise to maintain conduct standards set by the Health on the Net Foundation, www.hon.ch).
“When patients come to my office, I always ask them if they have Internet access,” says Dr. Lohr. “If so, I give them a list of reliable sites, such as the ACR, Arthritis Foundation, Hospital for Special Surgery, Johns Hopkins Arthritis Center, NIAMS, UpToDate, and disease-specific Web sites.”
Dr. Langford concurs. “I only send my patients to sites run by organizations that I know to have an excellent reputation for accuracy or whose content I have reviewed myself to assure that it is evidence-based,” she says. “I would not advocate giving patients their diagnosis code and suggesting they search randomly.”
Prescription for Information
Without formally recognizing it, many rheumatologists already give their patients “health information prescriptions.” In 2003, the American College of Physicians-American Society of Internal Medicine Foundation teamed up with the National Library of Medicine and launched a pilot program called the “Information Rx Project.” After writing a medication prescription, physicians were encouraged to give their patients a health information prescription that referred them to the MedlinePlus (www.medlineplus.gov), a consumer health site of the National Institutes of Health.
Preliminary findings from pilot projects with internists in Iowa, Georgia, and Virginia reveal that 97% of participating physicians make referrals to MedlinePlus and the overwhelming majority uses it daily. Internists who participated in the pilot programs said MedlinePlus empowers patients (54%), explains difficult concepts and procedures (43%), and improves patient–physician communication (42%).
When patients come to my office, I always ask them if they have Internet access. If so, I give them a list of reliable sites.
Dr. Schned takes the health information prescription concept one step further by downloading and printing the information from Web sites while in his office and giving it directly to his patients. “Since my colleagues and I have reviewed many Web sites, I have a ‘favorites’ list of sites that I know are trustworthy, from which I can choose items to print,” says Dr. Schned. “This way, I can tailor the information precisely to my patients’ needs. I usually tell them which sites I recommend and they appreciate that.
“My partners and I use several sources, such as academic sites like the Mayo Clinic, the Hospital for Special Surgery, and the Cleveland Clinic,” he continues. “We also have links to specialty societies, like the ACR, as well as foundations and non-profits, such as the Arthritis Foundation, Lupus Foundation, Vasculitis Foundation, and National Institutes of Health.”
Dr. Schned and his colleagues have also taken online information into their own hands by creating their own Park Nicollet Rheumatology Web pages. “For many topics, we developed our own information based on our perspective,” he says. “For example, we wrote our own information on lab tests and medications, as well as several ‘key’ diseases we treat, like lupus, rheumatoid arthritis, and degenerative joint disease.”
Many rheumatologists interviewed here like to reinforce to their patients that the Internet is no substitute for a physician’s guidance. “For my patients who use the Internet, I emphasize that they be cautious in interpreting things they read and to never act upon anything without discussing it first with their physician,” adds Dr. Langford.
Jennifer Decker Arevalo is a medical journalist based in San Diego.
Are Your Education Materials Patient Friendly?
Physicians usually review patient education materials – be they print or Web site – to ensure that they are evidence based, unbiased, and written by experts in the field. “At the ACR, content experts in conjunction with a medical writer compose the patient fact sheets,” says Dr. Lohr. “The ACR’s Patient Education Task Force’s role is to provide an unbiased, second layer of review to check that the information being distributed is factual.”
However, there is more to patient education than having your facts straight. Because the average American reads at the 8th grade reading level, patient education materials should be written in plain language. “This means writing in ways that people can understand,” says Helen Osborne, MEd, OTR/L, author of Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. Plain language includes:
- Organizing messages from the reader’s point of view;
- Using common one- or two-syllable words (sometimes called “living-room” language);
- Defining complicated, yet necessary, medical words clearly and simply;
- Having just one concept in a sentence; and
- Writing in a friendly, respectful tone.
One method to test the readability level of a piece is to administer the Simple Measure of Gobbledygook (SMOG) factor, which looks at the number of three or more syllable words in a text sample and calculates the years of education a reader would need in order to understand the text. (A SMOG calculator is available online at http://webpages.charter.net/ghal/SMOG.html.)
In healthcare today, patients and their families are asked to assume a lot of responsibility for their treatment and care. In order to do so responsibly, they must first learn what to do.
Pictures Worth A Thousand Words
“Just as important as words are the graphics and layout,” says Osborne. “Simple graphics and good layout help make messages easier to understand. For instance, simple line drawings such as pictographs can show, not just tell, ideas and actions that readers must know and do. Good layout, including proper font size and style, contrast, and adequate white space, help make documents look more appealing and inviting to read.” Serif fonts, such as Times New Roman, are easier for people to read.
“With the growing sophistication of Web-based educational materials that have pictures, interactive diagrams, and streaming videos, teaching and instructing patients has become much easier,” says Dr. Schned.
Even though patient-education materials from pharmaceutical companies are marketing oriented, “they are generally straightforward, informative, and fair about what they present because of the Food and Drug Administration’s strict, mandated guidelines,” says Dr. Altman.
“In healthcare today, patients and their families are asked to assume a lot of responsibility for their treatment and care,” says Osborne. “In order to do so responsibly, they must first learn what to do. Along with good teaching, well-written and -designed patient-education materials can help accomplish this goal.”
