Providing patients and family caregivers with understandable health information might seem like common sense, but it’s not as common as you might think – and its impact on care has big implications when it comes to health outcomes and the cost of healthcare. The Institute of Medicine defines health literacy as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”
Just 12% of adults are considered to have proficient health literacy; the remaining 88% have some degree of difficulty understanding and using the everyday health information that is routinely available in healthcare facilities and other sources. Often referred to as a “hidden epidemic,” misunderstanding or misusing health information can negatively affect health status, health outcomes and health care use and also contributes to rising health costs.
For patients and family caregivers navigating illness or injury, trying to understand all the information that is presented during diagnosis, testing and treatment is incredibly overwhelming. Calling it “information overload” is putting it mildly. They are likely hearing medical terms and processes that are new to them, and at the same time, trying to manage the stress and physical limitations caused by the health issue in the first place. These factors combined can make it nearly impossible to understand all the medical information being presented.
Improving Patient Proficiency
Research indicates that effective doctor-patient communication is linked to higher patient and doctor satisfaction, improved adherence to treatment plans, more appropriate medical decisions and better health outcomes. While that may not be surprising, ensuring effective doctor-patient conversations is easier said than done. Most patients struggle with health literacy, and doctors often fail to provide medical and health information in a way that can be easily understood.
One study evaluated how well people understood the care they received in an emergency department (ED). Patients were interviewed at discharge and asked whether they understood the following four factors: their diagnosis and cause, the ED care received, recommendations for post-ED care and return instructions. Seventy-eight percent of the patients had “deficient comprehension” on at least one of the factors; 51% were deficient in at least two factors. Although the majority of patients were incorrect in their understanding, only 20% reported difficulty understanding these four factors. What’s more, the majority of patients who struggled to correctly understand one or more of these factors were completely unaware of their lack of understanding.
The Physician’s Role
Given these alarmingly low health literacy rates, doctors must work to ensure that the information they’re presenting to patients is more easily understandable. In addition to providing information in language that can be clearly understood, doctors should check with patients to be sure the information is understood and allow time to answer any questions.
To maximize understanding, written materials should:
- Be plainly worded, with no medical jargon
- Include diagrams and simple pictures as appropriate
- Use bullet points and short sentences
- Emphasize what the patient needs to do
- Skip unnecessary information
When conveying information orally, doctors and other medical staff should:
- Encourage open communication with patients and encourage them to ask questions
- Only communicate key points and avoid excessive information
- Speak slowly and avoid jargon
- Use analogies that patients can relate to
- Read their handouts with the patient, highlighting and circling important parts
The type of information provided by doctors is only one aspect of all patient-doctor communications. Of course, it’s also critical that doctors listen carefully to the patient’s story—it’s a key piece of a proper diagnosis. Unfortunately, many doctors find it hard to listen intently; many doctors interrupt patients just 12 seconds into their initial description of symptoms and issues—in both emergency departments and primary care offices.
The use of electronic health records has been both a blessing and a curse, leaving many doctors feeling like the use of EHRs undermines their connections with their patients. Doctors who work in hospitals are concerned that EHRs detract from time spent with patients, and office-based doctors report that EHRs reduce the quality of their patient interactions.
Sometimes the patient and doctor are simply not in sync with what is being discussed. A study asked doctors to complete a survey about a recent patient visit, noting what they believed their patients thought was the cause, meaning, treatment and control of their conditions. Guess what? Patients and doctors were frequently not on the same page. The doctors’ perceptions of their patients’ beliefs were significantly different than what the patients thought. And often, doctors carried an expectation that their patients’ beliefs would be more aligned with their own.
The study also found that doctors had a better understanding of their patients’ views when patients asked frequent questions, expressed concerns and stated their own opinions.
So what can we do to improve these lines of communication?
Doctors can commit to more fully and intently listening to the patient without interruption. It is on the doctor to set a tone for each appointment, where the patient feels as comfortable as possible and is encouraged to share their story and concerns. Additionally, doctors can make improvements to their written materials, to ensure that patients can understand the information.
Patients can improve communication greatly by being prepared and engaged—at every appointment and interaction. Patients should write their “stories” and questions down before every appointment and go prepared. Patients should also work to ensure that they’re being heard, and take careful, detailed notes while still in the office. If patients don’t understand what the doctor is saying, they should ask for clarification, repeating their questions until they understand the information provided. It’s also a good idea for patients to repeat what they have heard back to the doctor to be sure they understand correctly. When needed, patients should ask for written materials, including diagrams and illustrations. Last but not least, patients should speak up if something doesn’t seem right.
No doubt navigating healthcare issues is never easy, but together—as patients and healthcare providers—we can do far more to improve communication and engagement, and ultimately health literacy. Our health and our troubled healthcare system depend on it.
Great article, Roberta. I really like how you’ve look at health literacy from the different roles involved. It is so important to think holistically about how to create clear communication channels that support patient engagement with their care. Well done!