Health Literacy

From Another Point of View: A Patient’s Perspective about Health Communication

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

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

To be true partners in treatment and care, patients and providers need to communicate in ways that allow each to understand the other. Providers, for example, need to be clear when they talk with patients about treatment options and self-care instructions. Patients, in turn, need to communicate their symptoms, concerns, and values so that the provider has sufficient information to make appropriate treatment recommendations.

Patients often find it difficult to speak with health providers. They may fear that the provider won’t like them if they ask questions or raise concerns. They may feel ashamed to say that they do not understand medical terms that the provider is using. Or they may be uncomfortable talking about personal issues with a provider who is several decades younger than themselves.

Regardless of why communication is difficult, patients and family members still need to speak up in order to get their needs met. One woman who has a lot of experience doing so is Joan Roberts. Although not trained as a health professional, Roberts has a lifetime of experience in healthcare as a patient, family member, mother of five children, and friend. She knows how valuable it is for health providers to understand problems from the patient’s perspective. “You have to tell them what you think you need and what you want,” says Roberts. There are ways you can help patients do that. Here are some tips you can use and some you can pass along to patients as you help them become better communicators.

Set up a respectful relationship. Patients and providers alike should be upfront about their expectations of each other. Roberts often starts her relationship with a provider by smiling and saying, “You might be sorry I’m your patient – I like to ask a lot of questions.” If a person is shy about asking questions, you can help by letting her or him know you want to be asked questions. And when there is not enough time to answer all of a patient’s questions, you should make it easy for either you or the patient to say, “Next appointment, let’s make sure we talk about…”

Appreciate age differences. Having grown up in the 1930’s, Roberts finds that many of her contemporaries are unaccustomed to questioning medical advice and may feel that it is disrespectful to raise concerns or differences of opinion. Health professionals can counter this by periodically asking patients for their questions, opinions, and suggestions. Age may also factor into communication when there is a considerable difference in age between the provider and patient. For example, older patients who are treated by much younger providers may feel uncomfortable talking about intimate and potentially embarrassing concerns such as incontinence, memory loss, or sexuality. One way that providers can make this easier is to start the conversation with, “Do you ever wonder about ….?” or “Many patients complain about…”

Ask patients to take note of symptoms. Help patients understand the benefit of carefully noting their symptoms and pain as they get ready to call or visit a health provider. Offer them suggestions about what this should include: keeping track of when the symptom starts, how often it occurs, how long each episode lasts, and what it looks like. To help patients describe the intensity of pain, you can suggest Roberts’ method of using a combination of numbers and words. She not only rates the pain on a scale of 1 to 10, but also uses descriptive words to express her experience. These include such words as “achy,” “burning,” “stabbing,” “stiff,” “tingly,” “sore,” and “annoying.”

Encourage patients to keep personal health records. Providers are not the only ones who benefit from jotting notes in a medical record. Patients, too, can maintain personal health records with information about their medical problems, prescription, and over-the-counter medications, herbal remedies, vitamins, health instructions, immunizations, test results, insurance information, and contact numbers for close family members or friends. One way to help patients do this is to provide them with a model form for keeping these records. These forms may also include a section for patients to note questions they want to ask in their next phone call or appointment. Providers can help patients create these personal health records by letting them know the value of such information.

Support the effort of patients to invite family members or friends to act as advocates. It can be hard for patients to advocate for themselves, especially when they are timid about speaking up, overwhelmed or scared by upsetting news, or too ill to process information. Encourage patients to invite a family member or friend who can help by taking notes and voicing concerns. If this advocate cannot be present when important information is being discussed, try to arrange a way that person can still be involved. One way Roberts her advocate is involved is by saying, “My son might want to talk with you. When would be a good time for him to call?” Encourage patients to make similar requests.

Provide clear, specific information. Whether discussing test results, treatment options, or medication instructions, patients are likely to want to know: what impact this will have on their lives; what they can and cannot do; likely risks, costs, and discomfort; and where to get more information. Roberts often requests that this information be in writing so that she can keep a copy in her personal health record. Even when her lab tests come back normal, Roberts does not want her provider to say, “If you don’t hear from me that means your test is OK.”

Overcome communication barriers. Help patients understand how important it is to wear their hearing aids or eyeglasses. Encourage them to tell you if you are speaking too softly or if the print in the material you give is too small to read. Become aware of each patient’s possible communication barriers and make sure to communicate – in print, in person, and over the phone – in ways that patients can understand.

Encourage ongoing learning. Given that medical appointments are usually brief, a great deal of learning happens outside of the actual patient-provider encounter. You can help by assembling lists of books, Web sites, telephone hot lines, and groups from which patients can learn more about their specific diagnosis or medical condition. Roberts, for example, says that she looks up information in a consumer-oriented health encyclopedia and supplements this with books and newsletters on topics of her specific interest.

When patients are encouraged and are able to do what Roberts does — prepare, speak up, and continue to learn — they can leave each healthcare encounter with the confidence and satisfaction that they did their part to communicate.

To Learn More:

Osborne H. Partnering with Patients to Improve Health Outcomes. Gaithersburg, MD: Aspen Publishers; 2001.

Article reprinted with permission from On Call magazine and published by a division of Boston Globe Media.