By Christopher Guadagnino, Ph.D..
Terri Tye is The Joint Commission’s director of public affairs and heads the agency’s public policy initiative addressing major issues affecting the quality and safety of health care.
PND: What is The Joint Commission’s role in promoting health literacy?
TT: We recently issued a white paper report, “What Did the Doctor Say?:” Improving Health Literacy to Protect Patient Safety, as part of our public policy initiative. We put together a round table of adult learners, health literacy experts, practicing physicians, governmental agencies and patient safety experts; and we held a national conference on health literacy and patient safety, both of which informed the content of the report. We are engaged with the Institute of Medicine’s round table on health literacy and we have other related projects, such as the Hospital, Language and Culture project, where we did a benchmarking study of how well hospitals provide culturally competent care, which will spawn future recommendations from us on the subject and may impact our accreditation standards down the line. The Joint Commission is using its own visibility in the field to raise these issues.
PND: How would you describe the problem and scope of health illiteracy in America?
TT: Health literacy as defined by the Institute of Medicine describes the ability of a person to be able to understand and use health information, and includes cultural issues that may influence how information is shared and received. Literacy studies have shown that about half of the U.S. population lacks the reading skills to be able to use text to make complex decisions, the kind of decisions one needs to make when engaging in their own health care. It’s even worse for using numbers, which is important when you have to assess risks of treatments, for instance. Clearly, if the person is unable to understand their health care diagnosis, treatment plan or medication regimen, they can be in harm’s way. Not being able to understand pill bottles and recommendations for how to take medicine, or how to look for contraindications, can lead to medical errors. People who have reading issues are not likely to share them with their physicians because, unfortunately they feel a sense of shame. Communication problems are the primary root cause of the nearly 3,000 sentinel events that have been reported to The Joint Commission, which are medical errors that lead to unexpected deaths and catastrophic injuries. Those are communication issues either between health care providers or between care providers and patients.
PND: Is there a taxonomy of negative impacts from low health literacy?
TT: There hasn’t been a great deal of research looking specifically at medical error in relation to health literacy, and this is one area in the paper for which we call for greater research. It seems to be obvious that patients who don’t understand their health care provider, or who don’t understand health care information, lead to medical errors. The Joint Commission did its own study of patients with low English proficiency, which is an aspect of health literacy because it affects the ability to understand. The study showed that, while people with low English proficiency were about at equal risk for experiencing a medical error, the severity of the error was greater for people with low English proficiency.
PND: What patient safety goals does The Joint Commission have as part of its accreditation standards?
TT: There are nine goals related to health literacy, and the report illustrates how health literacy would impact the ability of a health care organization to comply with The Joint Commission’s national patient safety goals. The issue of health literacy is not widely known. Based on the feedback we’ve received, physicians, nurses and others in the health care setting recognize patients who are having difficulty understanding, but for many they didn’t know that it had a name and that there are specific things they can do to mitigate the impact of low health literacy. Our accreditation standards focus in several places on the need for effective communication between clinicians and their patients. There are implications for public policy, accountabilities for individual providers, and accountabilities for the administrative side of health care. It’s not something that The Joint Commission alone could resolve through accreditation.
PND: What are the report’s specific recommendations?
TT: To make effective communication an organizational priority to protect the safety of patients, to address patients’ communication needs across the continuum of care – including pre-entry into the system, the health care encounter itself, transitions of care and self management, and to pursue policy changes that promote improved practitioner-patient communication. Everyone who works in the organization, whether a hospital or physician practice or ambulatory clinic, should be made aware of how to recognize patients who may have literacy issues, such as the patient who repeatedly says they’ve forgotten their glasses and needs help reading. Signage and the forms that are used need to be readable, and plain language needs to be used in all patient encounters, from the reception desk through discharge planning. We recommend a universal precaution that, for every patient you should use plain and clear language because even somebody who is highly educated and literate, when they are not well their cognitive functioning is impacted. Health care encounters should use things like the teach-back method, where the patient is asked to repeat back what you said if you’ve given an instruction for medication or a treatment protocol or a diagnosis. Or, if you’re showing how to use a device or how to self-inject a medication, you can ask the patient to demonstrate it back to you. Providing patients with a wallet card that lists all their medications and dosages is important and also helps providers down the line when patients have it. Being empathetic with patients who find it difficult to stick to medication regimens can elicit why they’re not being compliant. Sometimes greater patient education is needed. For instance, studies have shown that patients do better when they receive individualized patient education and communication, or disease management techniques such as having nurse call centers interact with patients on a continuing basis. There are resource implications for a small physician office, which may be an obstacle.
PND: What resources are available for physicians to improve communication with low-literacy patients?
TT: The National Quality Forum has a toolkit to help make informed consent forms as clearly written as possible. The AMA has a toolkit available for physicians called Helping Your Patients Understand, for example by focusing on two or three things that the patient needs to know, not overloading them with information. One health literacy expert is a practicing physician and carries a pill bottle in her pocket. She asks new patients to interpret the directions for taking the medication that are on this standard pill bottle. There’s a new assessment tool called the Newest Vital Sign <www.newestvitalsign.org> which asks a patient to interpret a nutrition label. There’s also Pfizer’s Clear Health Communication initiative which offers resources online for physicians, such as Ask Me Three posters for the physician office – prompting patients to ask the right questions of their physician, e.g., what is my main problem, what do I need to do about it, and why is that important? In the pediatric field, physicians can use the Reach Out and Read program to teach parents to read to their children. Physicians can refer patients to adult learning programs that really can change people’s lives. As an example, I got a call right after our health literacy report was released by a physician at an academic medical center in the Chicago area who said the paper gave her a “hallelujah” moment. As a pediatric otolaryngologist she runs a cochlear ear clinic and recognizes that some of the disparities and outcomes of her patients relate to the health literacy levels of the parents – because for cochlear ear implants there is a lot of therapy that has to occur in the home. She’s now using teach-back and assessing the literacy levels of the parents as part of a study.