Are Your Patients Understanding You?

We have all witnessed a newly diagnosed patient’s glazed-over expression as we review their cancer treatment plan. Often, patients are facing multiple referrals to different specialists and support staff, not to mention appointments for tests and procedures. While the patient tries to absorb all this information, we healthcare providers may further complicate things by using medical terminology. Recently at a patient and family focus group, a few patients shared with me that they wished their physician and healthcare team spoke to them in a way that they understood.

“I wish they spoke in plain language.”

“I didn’t understand all the appointments and what exactly they were for.” 

How can the patient navigator help?  The navigator is the educator for the patient and family.  Navigators identify the patient’s preferred learning style and review the treatment plan, appointments, tests, and procedures in an easy to understand manner.

Cancer diagnosis and treatment plans have become increasingly complex. At the same time, a core tenet of quality, patient-centered, value-based care is engaging patients in their own care and encouraging participation in shared decision-making.

Estimates are that close to 9 out of 10 adults are challenged in using everyday health information, that is, information that is provided in a variety of settings including healthcare facilities, through the media, and in their communities.^{1, 2, 3}

According to the Centers for Disease Control and Prevention (CDC), health literacy skills are necessary for “Anyone who provides health information and services to others, such as a doctor, nurse, dentist, pharmacist, or public health worker,” so that they can:⁴

• Help people find information and services
• Communicate about health and healthcare
• Process what people are explicitly and implicitly asking for
• Understand how to provide useful information and services
• Decide which information and services work best for different situations and people so they can act

Plain Language, Please

Plain language is communication that a person with cancer can understand the first time they read or hear it.  A plain language document is one in which, with reasonable time and effort, people can find what they need, understand what they find, and act appropriately on that understanding.

Key elements of plain language include:

• Organizing your information so that the most important points come first
• Breaking complex information into easy-to-understand chunks
• Using simple language and defining technical terms
• Using the active voice

Keep your audience in mind. Language that is plain to one set of readers may not be plain to others. Test any materials you’ve developed before, during, and after they are completed.

Speaking plainly is just as important as writing plainly. Many plain language techniques also apply to verbal communication.  For example, avoid jargon and take time to define and explain any technical or medical terms.

Another effective communication tool is a simple Cancer-Patient-Appointment-Checklist. The checklist can include referrals to specialists, support services, tests and procedures, along with definitions of medical terms in plain language. Patients can take the appointment checklist home, review it, and then call the navigator with any additional questions. You can also create disease-site-specific appointment checklists.

Does Your Program Need a Health Literacy Check-Up?

ACCC’s health literacy initiative, Let’s Be Clear: Communicating to Improve the Patient Experience, offers a practical tool for assessing your cancer program’s health literacy and resources to strengthen your staff’s health literate communication skills.

Finally, I’ve included some guidelines for teaching health literacy so that healthcare providers can educate patients using plain language, here.

A diagnosis of cancer is frightening for patients and their families. The medical terminology and jargon we healthcare professionals often use not only increases their anxiety, but is also a barrier to engaging patients in their own well-being.

Let’s lessen the anxiety and improve the patient experience by using plain language and making organizational health literacy a priority.

References

1. Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Health literacy: A prescription to end confusion. Washington, DC: National Academies Press; 2004.
2. Kutner M, Greenberg E, Jin Y, Paulsen C. The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006-483). Washington, DC: U.S. Department of Education, National Center for Education Statistics. 2006.
3. Rudd RE, Anderson JE, Oppenheimer S, Nath C. Health literacy: An update of public health and medical literature. In JP Comings, B Garner, C Smith, eds. Review of adult learning and literacy (Vol. 7)  Mahwah, NJ: Lawrence Erlbaum Associates; 2007:175-204.
4. Centers for Disease Control and Prevention. What is health literacy? Available at https://www.cdc.gov/healthliteracy/learn/index.html. Accessed December 5, 2017.