Today, October 31st, marks the end of yet another Health Literacy Month. Health literacy costs the US healthcare system an estimated $236 billion annually. Given this exceptional financial opportunity, health systems, employers and insurers, including CMS, should be eager to reap the financial rewards from addressing this problem. Yet, avoidable healthcare costs accrue, morbidity escalates and people are dying because they don’t understand health information.
Over the years, I have talked to thousands of patients and community members who make it painfully clear that our health communication strategies are failing and they pay the price. A few months ago I accompanied a man I will call Mr. Jones to a doctor visit. I observed this dialogue:
Doctor (mostly looking at the floor and not Mr. Jones): “We got the biopsy and it looks like a neuroendocrine cancer. They did the stains and it is pomegranate positive, synaptophysin positive negative and they did all the different markers. We need to do gene sequencing and extract some DNA.”
Mr. Jones: Silence
Doctor: I looked at your labs. Your white count is on the low side but your hemoglobin, your platelets are good, electrolytes and liver function looks good. What we should chat about today is what you want to do about treatment.
Me: Mr. Jones, did you understand any of that?
Mr. Jones: Nah.
He decided to forego treatment because he didn’t trust the doctor. Later, I asked why. He said, “She doesn’t talk to me like I am a person. Do I really need that treatment?”
A week later, I visited a woman in the intensive care unit (ICU) who had suffered a stroke. A six-day hospitalization followed her ICU stay. When I asked about her symptoms, she said she felt a vague tingling sensation the previous week and thought she was tired from working two jobs. She had also noticed blurry vision for several weeks and said, “I figured I would just make an appointment with the eye doctor to see if I need glasses.” I asked if she called her doctor to discuss any of these symptoms. Her experiences were riddled with distrust and avoidance because doctors talked “over her head.” She mainly obtained her health information from her friends, Google and YouTube videos.
These examples highlight why addressing health literacy must become an imperative for the health system. Mr. Jones deserves to make informed treatment decisions and receive information in a language he understands. The four-day ICU stay, subsequent hospitalization, and rehabilitation for Ms. Smith were completely preventable but cost her insurance company nearly $100,000. Both of these cases and so many more are clearly linked to solvable health literacy challenges.
Low health literacy remains unaddressed primarily because we have failed to prioritize and financially support its interventions. We have also failed to act upon the direct correlation between health literacy and engagement in care. If we listen to narratives about why people delay care, select an ER visit over a primary care visit or avoid care altogether, the stories speak for themselves.
Over the years, the most common rebuttal I have encountered to investing in health literacy solutions, particularly from payers, is that the return on investment (ROI) must be demonstrated before these solutions can be prioritized. The irony is that if payers were to qualitatively explore reasons for avoidable healthcare spending with a community-focused approach, the ROI opportunity would be undeniable.
The second most common rebuttal is that education and information are inadequate to activate a person to change a health behavior. This is false. Addressing people’s fears and concerns about health in plain language is activating. The awareness produces a spark that, for many, can disrupt their path to long-term morbidity and, in some cases, even death. I experienced this over and over again in my infectious disease practice. Health information delivered in the right language and tone saved countless people from the scourge of AIDS.
These days, it is rare to have a healthcare conversation without some mention of patient-centered care and value-based care design. Neither of these strategies can be successfully implemented without first understanding what patients need, want and understand. It is unacceptable that we continue to have these conversations without implementing strategies to identify and address the escalating cost of healthcare and drivers of poor health outcomes, like low health literacy.
Health education is a billion-dollar industry. Health systems and payers contract millions annually on ‘check the box’ health education, whether print materials, websites, bulletin boards or health information populated in electronic health records. But do we know who is benefiting and how? How could people like Mr. Jones and Ms. Smith?
We must begin asking important questions about health education investments with the intention to act and save lives. We must ask, ‘To what extent do people engage with health information procured by insurers and health systems?’ We must ask, ‘Who is engaging with and is it in the right language?’ We must ask, ‘What systematic and ongoing evaluations are occurring to understand the impact and return on investment associated with health information, communication and health literacy products and services?’
Finally, we must ask, ‘How can we train providers, both incumbent and in the pipeline, to lead with plain language because it is better for patients, builds trust, reduces fear, and saves lives?’
By the time next October, Health Literacy Month, rolls around, I wonder if we will have committed to prioritizing health literacy and afford it the time, attention, and resources people need and deserve. If we haven’t, it certainly won’t be because we didn’t know.
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