Have you ever wondered how much patients understand during a doctor’s visit or remember afterward? Research shows it is only a fraction of the information provided. It’s far worse if the patient speaks another language. Health literacy can improve health outcomes and lower costs. When the overall well-being of patients is front of mind, the whole health system benefits — patients, providers, staff, and the organization.
What is health literacy?
There are four contributing factors to health equity, and health literacy is one of them.
Health literacy is the inability to obtain, process, and understand basic medical and health information. This information is essential to accessing, using, and making healthcare decisions. Though general literacy contributes to gaining health literacy skills, general literacy and health literacy are NOT one and the same. And an individual can be quite well-educated but still suffer from health illiteracy.
Communication is a two-way street. It involves the patient and the healthcare party with whom he or she is interacting – the doctor/NP/PA; the healthcare staff; or a pharmacist, PT, behavioral health practitioner, or social worker – or the system itself – Medicare, Medicaid, or a commercial insurance provider; special state programs.
It involves spoken and written words, the communication method to share and gather information, images used to convey the problem or access to treatment, and the signage used to identify where to go.
David Baker, MD, MPH writes in the Journal of General Internal Medicine that health literacy is a “dynamic state,” as one’s literacy level changes based on the encounter, the medical issue at hand (e.g., a routine preventive visit versus a cancer diagnosis), and the provider or healthcare system used at the time.
Gaining health literacy skills is dependent on an individual’s level of knowledge, capacity, and motivation to learn PLUS the resources provided by the healthcare system.
However, health organizations don’t always consider, evaluate, and measure these factors.
Health illiteracy is often a silent issue because it can be difficult to identify in a clinical setting if clinicians and staff are not sufficiently cognizant of the importance of what, when, and how they communicate, including their body language.
It is imperative to ensure the use of plain language rather than medical jargon. The use of techniques like the teach-back method improve patient understanding of his or her clinical status and any recommendations which are made, as well as help assess a patient’s ability to follow the guidance and instructions given.
Patients may be ashamed or embarrassed to say they do not understand what is being said about a diagnosis or treatment plan or how to get access to the care, including medications and behavioral health services, that may be needed.
It’s also difficult to identify who is at risk for health illiteracy because it can affect anyone.
Cost of health illiteracy
It’s estimated 90 million Americans or nearly one-half of the population lack basic literacy skills. Experts believe there is a strong association (but not direct causation) between low literacy and low health literacy.
Health literacy is not just a patient’s ability to read or understand medical information. A patient who is literate when it comes to reading, writing, and numbers may have low medical literacy. They may have trouble accessing healthcare services, talking to providers, and following a treatment plan.
In fact, understanding the medical world may require even more literacy than the norm due to medical terminology, research, and a fragmented, complex healthcare system. So, a patient can have low health literacy with high overall literacy.
According to the Partnership for Clear Health Communication at the National Patient Safety Foundation, patients with low health literacy have healthcare costs that are four times higher, have 6 percent more hospital visits, and are more likely to stay in the hospital for 2 days or longer.
Again, statistics can vary depending on patient knowledge of a medical issue, which may vary depending on the time, location, individuals involved, condition, and outside stressors.
The Center for Healthcare Strategies points out health illiteracy can and does cause a series of problems, including:
- Medication errors
- Readmittance to the ER
- Unnecessary ER visits
- Longer hospital stays and readmission
- Ineffective treatment
- Difficulty responding to health emergencies
- Missed appointments
- Incomplete medical forms
- Uninformed consent
- Misunderstanding of treatment plans, medication regimens, and the pros and cons of various options
- Poorer health outcomes
- Higher mortality rates
When a caregiver or parent has low health literacy, the whole family may suffer. HealthyPeople2020 points to a study that found children are more at risk for depressive symptoms and asthma when their parents or caregivers struggle with health illiteracy.
Several factors can impact one’s literacy, including, but not limited to:
- Socioeconomic status, including poverty
- Vision and/or hearing impairments
Again, this is not an exhaustive list, as every patient, even those with graduate degrees, may be at risk for health illiteracy due to the complicated nature of the medical arena. A person may have overall literacy, but their ability to understand health information may be low.
The most significant health disparities are among non-white racial and ethnic minority groups, especially those who do not speak English, or speak it as a second language. The National Assessment of Adult Literacy found Hispanic adults have the lowest average health literacy, followed by Black and then Native American/Alaska Native adults.
The impact is dramatic. The combination of low literacy and limited English leads to a two-fold increase in poorer health outcomes.
When it comes to age groups most impacted, adults aged 65 and older are most at risk. This is the fastest-growing segment of the population. As Baby Boomers age, this problem will escalate.
Helping older adults
Bernard Rosof, the Chief Executive Officer of the Quality in Health Care Advisory Group, said in a workshop on the issue that helping older adults navigate the increasingly complex health care system is a shared obligation between health care and the health care team. They should use literacy tools, principles, and practices to help seniors.
Older adults use many facets of the healthcare system and the system should make it easy for them to navigate it from every angle, including chronic disease management, polypharmacy, long-term care, palliative care, and insurance complexities.
According to the 2003 National Assessment of Adult Literacy, only 3 percent of older adults had proficient health literacy skills. As people age, cognitive abilities decline. A patient may also have physical impairments like hearing or vision loss, psychosocial issues, embarrassment or shame.
In older adults, low health literacy can result in avoidable pain, limited daily participation in activities, and emotional distress.
Screening tools can help identify issues with low health literacy at the clinician level, but the problems start long before the aging patient reaches the doctor’s office.
During a National Academies of Sciences, Engineering, and Medicine workshop, Mary Ann Zimmerman, Founding Director of Silver Spring Village, said that automated phone systems are a big problem. There are lots of menus and buttons to push to get to the right person. Long wait times on the phone further complicate the situation.
She cautioned against the use of big data and the broad generalizations which may result. Instead, the focus should be on the individual and creating a care system that addresses individual differences and at the person level.
Language and culture
Seeing a patient as an individual requires acceptance of culture and beliefs which may differ from that of a practitioner.
Treatment norms in Western medicine may not be accepted depending upon a patient’s cultural traditions and beliefs. This can impact a patient’s approach to eating, physical activity, stress management, and preventive care, just to name a few possibilities.
People with language barriers typically go to the doctor less and get fewer preventive screenings. Healthcare organizations can provide language services as well as educate these groups to improve health literacy so everyone can access the care they need.
Culture transcends race/ethnicity. It can include any belief that is different than the practitioner. This may include sexual orientation, religion, gender and gender identity, and more.
The United States is becoming more culturally diverse with each passing year. When English is a second language, the patient may have difficulty understanding a medical diagnosis and treatment protocol. Providing written communication in several languages helps bridge gaps.
The Center for Health Care Strategies points out this is likely to happen when cultural norms do not match the values of the dominant population within the healthcare system.
Culture may impact how a patient:
- Defines what is considered a health problem.
- Expresses concerns about problems or symptoms.
- Makes decisions regarding the type of healthcare service needed and when to seek help.
- Responds to treatment plans.
Culture, along with low socioeconomic levels and historic racism and discrimination, can lead to low levels of health literacy, thus exacerbating health disparities.
An article in The American Journal of Bioethics calls limited health literacy a “fundamental injustice of the healthcare system.” Studies show when you control for health literacy, racial and ethnic disparities in outcomes and quality of care are mitigated.
The article’s authors say it’s possible to achieve greater health literacy when practitioners and the system are on alert and take “universal precautions.” They presume limited health literacy for every patient until proven otherwise. These precautions also include the use of technology-supported communication and metric tracking at both the practitioner and system levels. Incentives can sometimes have a positive impact in motivating providers to address health illiteracy.
When a healthcare organization has cultural competency, patient health literacy levels can improve more quickly.
Breaking down barriers to medical comprehension
Health illiteracy happens throughout the patient journey. It may start with utilizing insurance and accessing care, understanding information relayed at the doctor’s office, or following treatment plans.
Enrolling in commercial insurance, Medicare, or Medicaid requires some literacy. An individual needs to understand and fill out the forms as well as utilize insurance coverage effectively.
When it’s time to see a doctor, a patient needs to know where to seek care and from which specialist.
Next, they have to explain their symptoms and history on medical intake forms.
In the office, many factors impact a patient’s ability to understand and communicate. Medical terms are commonly used by doctors when speaking to patients, but the problem goes beyond the terms used.
Patients may be overwhelmed or feeling stressed or afraid, diagnosis is highly-anticipated or the prognosis is poor or not as expected. When emotions run high, health literacy can be negatively impacted.
At home, a patient may have difficulty understanding the information on a prescription drug bottle. If a patient does not understand the treatment protocol, it’s difficult to be adherent and achieve the best outcomes.
There also may be a disconnect between what the doctor told the patient and what the prescription bottle says. A study in the Annals of Internal Medicine found the correct understanding of prescription drug labels ranged from 67 to 91 percent. Even among those patients who understood the label instructions, the majority could not demonstrate how to correctly take the medication.
Be A Healthcare Rebel
Patients should be healthcare rebels, asking as many questions as needed to fully understand what’s happening.
Providers should enable and encourage patients to share how they feel openly, engage them, and actively and patiently listen. Often patients are intimidated to speak freely from their gut and share their real experiences for fear of being dismissed. After all, they are not the medical expert in the room, with multiple degrees. However, they are the only ones who really know how their bodies feel and what they are actually thinking and believe in a given situation. Both patients and practitioners benefit if they recognize and respect that reality.
The Institute for Healthcare Improvement launched an “Ask Me 3” campaign to encourage patients and families to ask doctors three specific questions to better understand their condition and treatment.
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
Patients may be more emotional or less likely to stay focused due to outside stressors related to a given diagnosis or condition, making it more likely health literacy decreases for that visit.
Having this framework for patients is more important than ever before, as patients are often visiting the doctor alone due to COVID-19.
Screening tools and assessment
Health illiteracy is a silent epidemic. Practitioners are encouraged to assume EVERYONE has difficulty understanding medical information.
Several groups are trying to make health illiteracy a priority at the doctor’s office with quick and easy screening tools. Just like physician practices are using social determinants of health screening tools, health literacy tools are another resource to add to an organization’s health equity toolkit.
Pfizer has launched the health literacy initiative, Newest Vital Sign. It uses an ice cream nutrition label to identify patients with low health literacy.
It’s presented as a screening tool while taking vital signs as a way to help medical staff assess and solve communication barriers with patients.
Studies show nutrition facts take a certain degree of comprehension and analysis to understand how a serving of food fits into daily nutrition needs. That analysis can serve as an indicator of medical interpretation – a patient’s capacity to do basic mathematical calculations, ability to be mindful of different ingredients that may cause harm to them or their family, and the potential to make decisions based on provided information.
There are other tools available for medical professionals, with most taking only a few minutes. Merck has also had longstanding health literacy programming in place, including detailed guidance regarding the teach back method.
Screening alone won’t solve the problem. As aforementioned, it’s more complex. Health literacy is “dynamic.” Both the patient and healthcare provider are responsible for how information is conveyed and understood.
So, the effectiveness of screening tools like these will depend on what’s done with the data.
Of course, Pfizer’s tool is just measuring the comprehension of printed communications. What about the verbal conversation between a doctor and patient where medical terms are often used instead of simple language? Overall communication techniques can help.
According to a study by the Brown University School of Public Health, patients recall about 49% of the information provided by their doctor.
Researchers looked at coded transcriptions of 189 outpatient visits and then conducted an interview a week later with the patients. While patients accurately remembered about half of the information, 15 percent was remembered incorrectly or not at all.
That 15 percent could dramatically impact one’s health outcome.
While more highly educated patients remembered about twice as much information, the retention was still only 65% for patients with a college degree.
That’s why practitioners should assume all patients have difficulty understanding and using the information provided during a visit.
The study found patient recall would likely improve if doctors talked less and engaged the patient more. Open-ended questions also help, along with teach-back moments.
With teach-back, the doctor explains everything and then asks the patient to repeat the information back. That way, misinformation or forgotten instructions are addressed in the doctor’s office rather than at a follow-up appointment or after an adverse event.
The technique also helps a patient digest the information and think past their stress or worries about a health outcome.
Words and empathy matter, too, especially with a life or death diagnosis and prognosis.
Improving health literacy helps providers too
It’s unclear which approach is the best – screening or universal precautions like simplified communication.
Dr. Baker sums it up with reference to this George Bernard Shaw quote, “The main problem with communication is the assumption that it has occurred.”
Simply put, do not assume any patient understands everything you say. Don’t assume anything.
Conversely, do not make generalized assumptions that what you’re saying goes over someone’s head. This may happen in a clinical setting with an older adult who comes to an appointment with their child or caregiver.
There are factors within the system and our culture where at a certain point or age, the system stops seeing people and what their capabilities are in life. Clinicians should not make broad generalizations, but again treat the individual person before them.
Clinicians often speak to the younger family member or caregiver, rather than directly to the patient, even when there are no issues with the patient’s cognition. This is ageism. The patient may understand just as much (or more) as the younger person accompanying them.
Improving clinician well-being
At the end of the day, listening and empathy may be the best tool. An organization can have the best tools, strategies, and technology, but active listening and empathy are invaluable in furthering health equity and driving better health outcomes.
There’s an individual behind the diagnoses. Listening to and addressing needs are just as important (and sometimes more important) as treating their symptoms.
When patients absorb and comprehend more of what a clinician says, health outcomes can improve.
While improving health equity is important, clinician well-being also matters. Physician burnout is a growing problem as systematic stressors weigh on clinicians. After all, the doctor is human too.
The more you work on the health literacy of your patients, the more likely you are to remember the why behind your decision to enter medicine. Taking care of patients as people rather than as diagnoses can bring joy to a practitioner’s life which translates as a healing presence when meeting with patients. That joy can positively impact the health and well-being of both the patient and the clinician.
Imagine the outcomes that are possible if health literacy is kept front of mind!
What techniques are your organization using to make sure patients are health literate?
As a physician, healthcare executive at a Fortune 100 company, and integrative health practitioner, Z. Colette Edwards, MD, MBA knows the unique value of a holistic, whole-person approach to health and well-being. She also understands the challenges health inequities can present. Known as “The Insight Doctor,” she offers guidance and powerful tools that prepare your body, mind, and spirit for menopause, stress, and inflammatory bowel disease. Lastly, Dr. Edwards coaches individuals in the development of self-advocacy and health system navigation skills.