By Michael Villaire and Gloria Mayer

Published January 2008

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Unfortunately, most patients find "going to the doctor" to be inconvenient and sometimes even frightening. People with special needs find it especially difficult to make medical visits. But perhaps the most widespread population that is underserved in physician offices is the enormous group of Americans who are illiterate or have low literacy skills.

One reason is that physicians’ offices are not very user-friendly. Often, staff members do not recognize literacy problems in their patients, even though these patients must have basic literacy skills just to get past the reception area. Specialists, ancillary providers and hospitals present additional challenges to the low-literate patient. Sometimes it is difficult for these patients to find the correct office or to get through the admission procedure in a hospital due to the signs and various written documents they must decipher. After all, we live in a society in which reading is the expected norm. We generally assume that people know how to read.

Tools to help the low-literate person in the physician office setting come in two varieties: human and technological. Human tools consist of family members, caretakers, advocates, interpreters, nurses, staff and the providers themselves. Non-human tools include telephone systems, computers and various medical devices. Any of these tools can create a more patient-friendly environment, assist the low-health-literate person in navigating through the health care system and help achieve more positive health outcomes.

Family members. Family members are critical in the health care process, both for people who read well and for those who cannot read at all. Family members serve as advocates for patients, helping them with each provider they see and often interpreting complicated health care information or directions. A family member who can attend physician appointments and be there at home to help the patient comply with treatment protocols is ideal. If the family member can’t be home with the patient, however, telephone calls or periodic visits may achieve the same goal. Family members who understand the reading challenges faced by their loved ones can offer valuable support in a variety of ways.

The most basic support family members offer is that they can listen to and discuss with their loved one what the provider says in the exam room. Many patients – not just those with low literacy – are confused after an interaction with a health care provider and appreciate another set of ears and eyes to help. If the patient approves, the family member should be included in the office visit. The family member can help to read and interpret instructions or written materials the patient receives.

Caretakers. Caretakers can function much as the family does when the patient has no family. Some caretakers care for only one patient at a time, and therefore may have more time for assisting a patient with follow-up protocols. Assistance from a caretaker is even more valuable if he or she has some medical knowledge and understands medical terms. Caretakers are valuable to people who have difficulty reading and navigating the health care system.

Advocates. Advocates essentially act as the patient’s ambassador, helping the patient when they are needed. Advocates are either paid or work on a volunteer basis. They usually understand the health care system well, and can manage the many intricacies associated with obtaining health care. They can interpret language, help with follow-up, clarify directions, question bills, and obtain referral appointments.

Interpreters. Interpreters are used in doctors’ offices when the provider speaks a different language from the patient or the patient’s family. Health care interpreters are very useful for communicating complex information in a foreign language. Usually they are familiar with medical jargon and terminology and have experience interpreting for a particular site or health care provider. Normally they stand behind the patient, or off to one side, and try to interpret the correct meaning of what the provider says. They are a great support to patients and providers when there is no common language.

Nurses. Nurses in the provider’s office also can be of great help to low-health-literate patients. Nurses have been trained in patient education and adult learning techniques. Also, they are in a unique position to understand health principles, the target population and the work environment. Nurses can act as patient advocates or partner with advocates in the community. They understand privacy issues and can assist patients with reading and filling out forms. Nurses understand provider referral patterns and can assist patients in arranging appointments.

Office staff. Staff members in the provider’s office are key for identifying patients’ needs and for assisting low-health-literate patients in getting in to see the provider. They manage the "first contact" with the patient that should be handled with care and finesse. Is there a private place that enables the patient to tell the receptionist that he or she is having difficulty reading the forms, for example? Is there a location that is private enough so forms can be read out loud to patients with literacy problems? Does the receptionist communicate such information appropriately to nurses and providers, away from the ears of patients in the waiting room?

Health care provider. If all else fails, the provider usually has the most power to salvage the situation. If the provider knows that the patient has difficulty reading, he or she can communicate in such a way that the patient understands. When dealing with low-literate patients, health care providers must refrain from using medical jargon and must speak slowly, especially when giving instructions. Using the teach-back method is critical. Writing simple directions and using pictographs or videos also can be useful. And it’s a good idea to have someone in the office call the patient to see how he or she is doing.

But the most essential part of the equation is having an empathetic health care provider who understands the principles of low-health literacy. Office personnel cannot judge the patient or label the patient with negative descriptions. The low-health-literate patient is not dumb; he or she just has difficulty reading. It’s the provider who sets the tone and philosophy of the office. The provider should offer continuing education to office staff about health literacy and the best way to handle problems with literacy in the office setting. Accepting the low-health literate patient in the office and making his or her experience positive is a critical component of high-quality care.

Technology can be an enhancement to patient care, but it also can create additional barriers.

Telephones. Some phone systems place so many obstacles in the way of talking to a live person that the patient becomes angry before he or she has accomplished the purpose of the phone call. Other phone systems are user-friendly and assist callers in accessing information in a reasonable time. The phone system in the provider’s office must be user-friendly and adaptable to the various reasons people call.

Internet. There are ways to make the Internet more user-friendly for low-literate adults. A key point to remember is that health care providers should not discount computer technologies when it comes to helping low-literate patients. In fact, Internet-based consultation may act as a complement to regular health care. Clinicians should at least be aware of the various methods for making Web-based sources more useful for those with literacy problems.

Medical devices. Other technologies can be helpful to patients if developed and used appropriately. If the patient must take a device home, for example, the provider should make sure the patient knows how to use it properly. If the patient has questions or needs help trouble shooting, phone numbers should be available to call. Some physiological monitoring devices are now used routinely in disease management programs. Low-literate patients are good candidates for these newer techniques if they are clearly explained and adequate follow-up care is provided.

In the end, all environments in health care must be user friendly. Having health education materials, signs, forms, and other media in a low-literate format is not just the right thing to do – it is good business. Carefully assessing our patients’ literacy abilities and seeking to meet their individual needs is time well-spent. Even when clinicians are busy with their routine work, they must make time for each patient. Although the primary physician’s office is a good starting point, all places where patients seek health care must cooperate to bring down the level of educational materials. Only with a concerted effort can we make a difference in our patients’ ability to understand.

Michael Villaire, MSLM, is director of programs and operation, and Gloria Mayer, RN, Ed.D., FAAN, is president and CEO of the Institute for Healthcare Advancement, a non-profit organization that has published a series of "What to Do for Health" books that use simple, everyday language and illustrations aimed toward people with limited reading skills. Villaire and Mayer are also the co-authors of Health Literacy in Primary Care.