Teach, don’t preach: instilling health literacy principles from a patient’s perspective

Updated: Nov 2, 2020

Guest post from Carly Flumer, MS, Scientific Data Analyst at National Cancer Institute

My doctor flipped his piece of paper over and began to draw. I had given him a puzzled look as he verbally explained how the thyroid makes its signature hormones, T3 and T4, so he switched to a visual explanation. He drew a neck, a thyroid gland, and the pituitary gland, and explained their intricate teamwork.

The concept finally clicked.

I was diagnosed with papillary thyroid cancer in early 2017 at the age of 27. I was in graduate school and working full time. Upon my diagnosis, I was scared, as any patient would be. However, I didn’t do research, as I feel most patients would. I preferred to remain “in the dark;” I trusted my doctors and the information they were providing.

Luckily, I had a surgeon who was not only patient and kind, but also understood the concepts of health literacy and what to look for in a patient interaction. To make sure I could take an active, informed role in making healthcare decisions, he used several health-literacy communication principles:

Use various methods to explain complex medical concepts: As I mentioned above, my doctor watched my facial expressions as he was explaining a crucial concept to me. When I expressed confusion, he took it upon himself to try and explain it in a different way, by drawing it. People have different learning styles, including verbal (auditory), visual (such as through imagery), or by actually doing the task that’s being explained. Taking this into account in each patient encounter is important as doctors try and make their messages clear.

Clearly convey the risks and benefits of treatments: Cancer patients are often on a regimen of various medicines (such as biological therapy, immunotherapy, and chemotherapy). When presenting a new medicine during an appointment, it’s important for the doctor to explain not only what the medicine is for, but also what side effects to expect. Failure to mention these may result in a surprise for the patient. If the side effects are bad enough, patients may stop taking the medicine altogether (and they may or may not tell their doctor). When this occurs, patients may be deemed as “non-compliant,” when really another medicine may have been given.

Use active listening to develop a relationship with patients: Additionally, when conversing with patients, it’s important to get to know them on a deeper level to understand what their needs are. A doctor’s role is to provide adequate care to treat a patient. Building a relationship with that patient so that they feel heard and understood may lead to better patient outcomes. For example, I was presented the option to undergo a partial thyroidectomy versus a full thyroidectomy. A person can live with one-half (one lobe) of their thyroid, and choosing this option would help maintain my quality of life. Undergoing a full thyroidectomy would mean less of a chance that the cancer could recur in the other lobe later in life, but it would also mean taking a daily supplement for life.

As a young, 27-year old who had just started her graduate school career and was working full-time, maintaining my quality of life was top of mind. I felt like my doctor really listened to my personal values and goals and helped me choose the best option for me.

Use shared decision-making for better outcomes: My surgeon got to know me on a personal level and asked what was most important for me: quality of life or knowing the cancer could reappear. Recognizing that my surgeon had my best interest at heart gave me confidence in making the decision I knew was right for me. If we think about what makes us human, we can consider our morals and values, culture, religion, and upbringing in addition to our education, career, and family. When a doctor treats a patient, they aren’t just treating the symptoms; they’re treating a whole person.