Since October is Health Literacy Month, this is a good time to look at how addressing health literacy can help healthcare organizations advance patient engagement. An individual’s “health literacy” refers to their capacity to find and use information and services to take care of their health. A “health literate healthcare organization” refers to an organization that makes it easier for people to navigate its systems and to find and use information and services to take care of their health. Both patients and organizations have a responsibility to become health literate.
The Three Facets of Healthcare That Affect Engagement and Health Literacy
For both individuals and organizations, health literacy is foundational to patient engagement. A patient with low health literacy who tries to get care in an organization that presents many health literacy related barriers is not likely to engage well. Patients and families need to be able to engage with three facets of healthcare:
- The organization or system
- Providers and staff
- Health information (text-based and verbal)
At every patient touchpoint, we need to address health literacy barriers and cultural and linguistic factors that contribute to them. Here are some examples from my own family where health literacy could have been addressed more effectively.
Healthcare Could Have Done More for My “Engaged” Family
My father was well educated and had good health literacy skills so it was easy to assume he understood what he was told. His throat cancer had been treated with radiation which was considered successful in removing the cancer. But 18 months later, my parents and I went back to the surgeon because we were worried about my father’s voice changing. When the doctor came in he said, “Art, you were supposed to come back for check-ups once a month and I haven’t seen you in 18 months! Why?” Somehow, neither of my parents remembered hearing that part and my father paid a high price. This was a breakdown in the system. My father was trying to be an engaged patient but lacked the support he needed. The organization should have had some way of reminding patients about follow-ups. If my dog’s vet can send me a postcard about vaccinations, a healthcare system ought to be able to remind a patient with one of the most commonly-recurring cancers to come back for a re-check. Better system-level communication could have helped us be more engaged and could have saved my father’s life.
The Communication Failure
A few weeks later, we learned that the throat cancer had indeed returned and progressed. My father’s doctor was discussing treatment options with us. He described a laryngectomy and my father seemed almost ready to agree to it. But I realized from his questions that he had totally missed the part about not being able to speak after a laryngectomy. I intervened: “Dad, the doctor is saying that you won’t be able to talk after the surgery.” His eyes widened and he said, “What? Well, hell no! I’d rather die.” He had us call hospice the next day. What would have happened if I had not been there? This was a breakdown in patient/provider communication. How could this misunderstanding happen? This doctor cared deeply about my father, but he missed key cues in the dialogue. And my father missed the key point I knew was critical to him—the use of his voice. The doctor could have asked my father to “teach back” what he understood about the surgery, and the misunderstanding would have been uncovered. Moreover, the doctor could have used plain language. He could have talked about removing the voice box and then used the medical term, “laryngectomy.”
A System Failure with Written Communication
In the last weeks of my father’s life, he asked hospice for morphine. My mother called me one night and told me Dad was in great pain and ready for his first dose of morphine. But she couldn’t figure out how to give it to him. I quickly drove over to help and to my surprise, I couldn’t figure it out, either. The instructions on the box were for CCs and the dropper inside the box was labeled with mLs. We were stumped and called hospice. They explained that CCs and mLs are the same unit of measurement. I had been working in healthcare for 10 years but had never encountered that fact. This was a system breakdown in text-based health information. The pharmacy that packaged the morphine did not think about the patient’s or family’s health literacy when choosing the label. A small oversight for them meant great angst for my mother and me and unneeded pain for my father.
The Challenge Before Us
Notice that in all three areas of healthcare, patients have little control or influence. They get what they get. Yet, we too often place the onus for health literacy skills and engagement on the shoulders of patients and families. Instead, organizations need to address the health literacy challenges in each area noted above to improve both patient experience and medical outcomes. A national literacy study reported that only 12 percent of adults in the U.S. have proficient health literacy skills. We could lament that more people are not proficient. Or we could turn that statistic on its head and point out that this means the healthcare system is not understandable to, nor usable by, nearly 90 percent of the people they are supposed to serve. Where does the onus fall with that perspective? How are we doing with patient/provider communication to support health literacy? Research shows that despite healthcare professionals’ responsibility for clear and effective communication, they do not routinely use health literacy practices., How are we doing with providing appropriate printed information? Most text-based information in healthcare is written well above the 8th grade reading level, which is the average literacy level of adults in the U.S.1, More than 800 peer-reviewed studies document the mismatch between the literacy demands of health information and the functional literacy skills of U.S. adults.
What Your Organization Can Do Today
What needs to happen to better support patients in developing their health literacy so they can become engaged? Organizations must become “health literate healthcare organizations.” They can do this by:
- redesigning processes such as consents and discharges to be more patient-friendly;
- improving the readability and usability of print and web information;
- providing quality communication skills training to providers and staff, including the use of the “teach back” method.
Here are some resources to help get started.
- Building Health Literate Organizations: A Guidebook to Achieving Organizational Change
- AHRQ Health Literacy Universal Precautions Toolkit (2nd Edition) This toolkit can help primary care practices reduce the complexity of healthcare, increase patient understanding and enhance support for patients.
- American Academy of Communication in Healthcare researches and teaches relationship-centered healthcare communication.
References  Nielsen-Bohlman, L., Panzer, A., & Kindig, D. (2004). Health literacy: A prescription to end confusion. Washington, D.C.: National Academies Press.  Brach, C., Keller, D., Hernandez, L. M., Baur, C., Parker, R., Dreyer, B., … Schillinger, D. (2012). Ten attributes of health literate health care organizations. Washington, DC: The National Academies Press.  Kutner, M., Greenberg, E., Jin, Y., & Paulsen, C. (2006). The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). U.S. Department of Education. Washington, DC: National Center for Education Statistics.  Castro, C. M., Wilson, C., Wang, F., & Schillinger, D. (2007). Babel babble: Physicians’ use of unclarified medical jargon with patients. American Journal of Health Behavior, 31(SUPPL. 1), 22–25.  Schwartzberg, J. G., Cowett, A., VanGeest, J., & Wolf, M. S. (2007). Communication techniques for patients with low health literacy: A survey of physicians, nurses, and pharmacists. American Journal of Health Behavior, 31(Supplment 1), S96–S104.  Rudd, R. (2010). Improving Americans’ health literacy. New England Journal of Medicine, 363(24), 2283–2285.  Rudd, R. (2007). Health literacy skills of U.S. adults. American Journal of Health Behavior, 31 Suppl 1, S8–S18.