Patients with low health literacy and chronic diseases, such as diabetes, asthma, and hypertension, have less knowledge about their diseases and their treatments and fewer self-management skills than more health literate patients. They may be more likely to neglect preventive care and could end up needing far more complex treatments. Patients with low health literacy skills have a 50 percent increased risk of hospitalization compared with patients with adequate skills. Also, when compared to those with adequate health literacy skills, studies have shown that patients with limited health literacy skills enter the healthcare system when they are sicker. From the National Patient Safety Foundation cited research.
The current design of healthcare systems requires patients to possess and demonstrate multiple skills, including understanding and giving consent, interacting with health professionals, and applying health information to different situations in a variety of life events. For every task, patients must employ the major components of health literacy: print literacy (reading and writing), oral literacy (listening and speaking) and numeracy (using and understanding numbers, such as medication doses). Unfortunately, many people find these tasks challenging. In the only population-level study of health literacy skills conducted to date, the U.S. Department of Education’s National Assessment of Adult Literacy (NAAL) documented that only 12 percent of US adults are proficient enough in health literacy to understand and use health information effectively. Moreover, more than a third of adults are in the “basic” or “below basic” health literacy groups. Note that interpreting medication labels requires intermediate skill. This means that 36 percent of adult Americans have levels of health literacy below what is required to understand typical medication information.While the main purpose of the NAAL was to measure general literacy skills of American adults, approximately 20 percent of the questions were devoted to assessing health literacy. These questions used real life materials that focused on the ability of individuals to understand and use text, documents, and numbers pertinent to commonly encountered health situations.
There are multiple definitions of health literacy, in part because health literacy involves both the context (or setting) in which health literacy demands are made (e.g., health care, media, Internet, fitness facility) and the skills that people bring to that situation (Rudd, Moeykens, & Colton, 1999). Most definitions stress that information obtained should be understood in order to take action around health-decision making and to follow through with appropriate healthcare interventions. In other words, adequate health literacy is not just about understanding health information. Health literacy is a tool for action or behavior change that leads to improved quality of life and better health.It is important to note that the definition developed at The Calgary Charter on Health Literacy moves beyond the view that health literacy is a characteristic of the individual. Their definition states that personnel working in health-related contexts also need to be “health literate”. Health literacy becomes a shared responsibility between the public and health care professionals.
We know it's impossible to tell by looking who may be infected with HIV or a disease transmitted through blood or bodily fluids so health care professionals use gloves and other barriers for every patient. Similarly, because it's impossible to tell by looking who may or may not be able to understand health care information, we can assume that most patients will find it hard to understand much of the health information we communicate as providers. Because nine of 10 English-speaking adults have less than proficient health literacy skills, it is an issue that affects everyone and having higher education levels does not mean a person can fully understand a diagnosis or complex treatment regimen. Many educated and informed diabetic patients, for example, may not have a full grasp of how insulin and glucose interact to control blood sugar levels, or why it is important for them to get regular A1C tests to monitor their condition. Medical care is complicated, and many people struggle with understanding medications, self care, instructions, and follow-up plans. If providers and health systems work on ways to communicate with patients clearly, this can help minimize confusion and lead to better health outcomes.Laura LandroWall Street Journal Blog, July 6, 2010, Universal Precautions: A Model for Health Literacy?
It is important to remember that low health literacy affects all groups and segments of society. Each of us may have difficulty understanding health information at some point in our lives. However, there is greater prevalence and severity among certain groups, including older patients, recent immigrants, people trying to manage one or more chronic diseases, and those who are poor and less educated. Education, language, culture, access to resources, and age are all factors that affect a person's health literacy skills. Studies show health literacy is a strong predictor of an individual’s health status.Outcomes related to those who have limited health literacy are usually poorer than with those who have adequate health literacy. For example, studies have found that patients with high blood pressure,diabetes,asthma,or HIV/AIDSwho have limited health literacy skills have less knowledge of their illness and its management.
Choosing a healthy lifestyle, knowing how to seek medical care, and taking advantage of preventive measures require that people understand and use health information. The primary responsibility for improving health literacy lies with public health professionals, clinical professionals and the overall healthcare system. The healthcare community is vast and comprises everyone from the front desk staff to physicians, nurses, public health educators, pharmacists, dentists, dieticians, payers, community health workers, and beyond. We must work together to ensure that health information and services can be understood and used by all Americans. We have to engage in skill building with healthcare consumers, patients and health professionals. Adult educators can be also be productive partners in reaching adults with limited literacy skills.
Would emphasize these are extreme low literacy cases (basic graphing, multiplication and percentage skills), but providers should be aware of the high percentage of people who are not health literacy “proficient.” They come from all walks of life. Could refer back to the NAAL slide. Each of these scenarios could have very negative consequences if treatment plan is not understood.My example: When I taught ABE in the evenings, most students were adults around 25 – 65. Most had dropped out of school in 5th – 8th grade, lived without much education for a long time getting by, were predominantly white, and presented in a fairly sophisticated way. I wouldn’t have known outside the classroom they did not know basic match outside simple addition and subtraction. I had to teach basic multiplication tables, lower level division, and barely got a start with percentages. I’m sure you have many more examples like these from your career.
HL Making it Clear
Health Literacy: Making It ClearAdvancing Health Literacy Conference June 5, 2012 Elissa Director, M.A. Health Literacy Specialist New Jersey Health Literacy Coalition firstname.lastname@example.org www.njhealthliteracy.org
Our Agenda Today• Identify components of health literacy• Discuss what it means for practitioners to be “health literate”• Examine the impact of limited health literacy on patient health and health care costs• Discuss ways to reduce barriers to understanding health information• Review best practices to improve health outcomes through clear communication
What Is the New Jersey Health Literacy Coalition (NJHLC)?• Our mission: – A not-for-profit organization committed to improving health outcomes and increasing the efficiency of the health care system through better communication between health care professionals and the diverse communities they serve.• Our partners and stakeholders include passionate people from: – hospitals and clinics – federally qualified health centers (FQHCs) – public health agencies – pharmaceutical and biotech companies – health plans – universities – social service and community-based organizations – adult literacy programs – corporations Achieving Better Health Through Clear Communication
Why Does Health Literacy Matter?• Misunderstood health information from physicians, pharmacists and other healthcare providers puts a person’s health at risk based on: – educational level or cultural perspective – lack of understanding of health in general – health care professionals’ failure to present information in a clear and effective manner “Far too often, ordinary citizens are placed at risk for unsafe care because … [of] medical jargon and unclear language.” “The healthcare industry needs to gear up to employ practices that will meet the needs of increasingly diverse patient populations.” Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Call to action around public policy white paper, “’What Did the Doctor Say?:’ Improving Health Literacy to Protect Patient Safety." 2007
Poor Communication Is Bad Medicine“As clinicians, what we say does not matter unlesspatients are able to understand the information we givethem well enough to use it to make good health-caredecisions. Otherwise, we didn’t reach them, and that isthe same as if we didn’t treat them.” Regina Benjamin, MD Surgeon General of the United States
What Are They Talking About? When should I take my medicine? What do the warnings mean? What am I saying “yes” to? What does blood glucose mean? Why do I need a mammogram if I’m not sick? Can I use a spoon from my kitchen to measure my child’s medicine?The bottom line:What is my main problem?What do I need to do?Why is it important for me to do this?
The Cycle of Costly ‘Crisis Care’ A wide chasm often separates what providers intend to convey in written and oral communication and what patients understand. Too many people are hospitalized after being given ambiguous instructions about medications or failing to recognize symptoms of a worsening condition. Improved health literacy has the potential to help address issues of health care access, quality and cost.Koh, Howard K. et al, “New Federal Policy Initiatives to Boost Health Literacy Can Help the Nation Move Beyondthe Cycle of Costly ‘Crisis Care’”, Health Affairs, January 2012, published on line before print.
Sick patient seeks medical helpPatient is discharged, Staff at doctors office askand no one follows patient to complete complex,up with patient confusing formsHospital staff give patient a new Doctor explains patient’streatment plan, referrals, and condition and treatment planprescriptions; staff do not confirm using medical jargonpatient’s understanding Doctor writes multiplePatient’s condition gets prescriptions and referralsworse and patient goes for teststo the emergencydepartment Doctor does not confirm patient’s understandingPatient takesmedicines incorrectlyand does not follow Staff send patient homeup on appointments No one follows with a complicated set of up with patient written instructions
Cost of Low Health Literacy to the U.S. Economy $106 -$238 billion annuallyResulting from: • Medication errors • Excess hospitalizations • Longer hospital stays • More use of emergency services • Higher level of illness Vernon, J.A., Trujillo, A., Rosenbaum, S., & DeBuono, B. (2007). Low health literacy: Implications for national policy, from www.healthliteracymissouri.org/uploads/HLM/pdfs.Vernon.Report.pdf
What Does Literacy Enable Us to Do? Develop skills Acquire information Engage effectively in conducting daily life
What are the Fundamental Literacy Skills Required for the 21st Century? Communication Skills (Listening and Speaking) Reading with ComprehensionWritingNumeracy and TechnologyCritical Thinking
Could you understand a paragraph written with these words?• expected return calculate• option exercise equal• strike probability underlying• value present price• net negative set• spot below zero• time today using
“When Does Exercising Give You an Advantage?”“If you’re using expected return to calculate the option’s probability-weighted net present value, if you set the expected return below zero, the time value will go negative. If you set the strike price equal to zero, the option value will equal the exercise-today value, which will be equal to the spot price of the underlying.”Source: Marlow, Jerry. (2001) Black-Scholes Made Easy.
The Mismatch… 88% of the country isbelow the proficient levelin health literacy. (NationalAssessment of Adult Literacy –2003) Over 1,000 studies havedemonstrated that most health materials are written at levels of complexity farbeyond the reading skills of average high-school graduates.
Additional Health Literacy ChallengesPopulation Changes Health System Complexity The elderly population is The number of medications growing prescribed has increased The number of Americans Hospital stays are shorter with limited English Heavier reliance on forms, proficiency is growing written directions Greater self-care requirements Verbal instructions are often complex, delivered rapidly, and easy to forget in a stressful situationThe National Patient Safety Foundation
National Assessment of Adult Literacy (NAAL) Levels Proficient – 12% ( 26 million) Could calculate an employee’s share of health insurance costs using a table based on family income and size. Intermediate – 53% (114 million) Could identify three substances that may interact with an over-the-counter drug to cause side effects, using information on the over-the-counter drug label. Basic - 22% (47 million) Could give reasons why a person with no symptoms of a specific disease should be tested for the disease, based on information in a clearly written pamphlet. Below Basic - 14% (30 million) Could circle the date of a medical appointment on a hospital appointment slip.“The Health Literacy of America’s Adults: Results from the 2003 National Assessmentof Adult Literacy,” U.S. Dept. of Education, National Center for Education Statistics,September 2006.
Evolving Definitions of Health Literacy• “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”T Selden CR, Zorn M, Ratzan S, Parker RM. 2000. Health Literacy: January 1990 Through 1999. NLMPublication #CBM2000-1. Bethesda, MD: National Library of Medicine.• “Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate and use information. Health literacy is the use of a wide range of skills that improve the ability of people to act on information in order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills.The Calgary Charter on Health Literacy – Sponsored by The Centre for Literacy of Quebec, October,2008.
A Multidimensional Model of Health Literacy Health Literacy is a complex determinant of health. In addition to Fundamental Literacy, it includes these domains:1. Scientific Literacy - includes ability to understand and use science and technology, including some awareness of the process of science.2. Civic Literacy – includes ability to become aware of public issues and knowledge that personal behaviors and choices affect others in a larger community and society.3. Cultural Literacy – use of collective beliefs, customs, worldview, and social identity in order to interpret and act on health information. Zarcadoolas, C., Pleasant, A. & Greer, D. (2006). Advancing Health Literacy. San Francisco, CA. Jossey Bass.
Keep in Mind that Culture Can Determine…• Who is a member of the family• What are the roles of different family members• Who makes family decisions• What are beliefs about child care/elder care and care giving• What is the meaning of illness or disability• What are acceptable health practices ( preventive care, non- traditional medicine, etc)• What are attitudes toward health treatment (medical, mental health, dental, end of life care) and health care professionals
In Summary…. Health Literacy Is Not the same thing as general literacy. A rocket scientist diagnosed with diabetes may have trouble understanding a new and complex self-care routine. only about reading. Obtaining, understanding and acting on health information encompasses a range of skills including communication/interaction, writing, numeracy, technology, and critical analysis. A static condition. Factors that impact health literacy include our health status, our experiences and knowledge, language skills, aging process, cultural beliefs and values, and emotions.Jessica Ridpath, Research Communications Coordinator, Group Health Research Institute, Presentation, Introduction toHealth Literacy and Plain Language. September 2009
National Action Plan to Improve Health Literacy U.S. Department of Health and Human Services May 2010Some basic principles:(1) Everyone has the right to health information that helps them make informed decisions.(2) Health literacy is part of a person-centered care process and essential to the delivery of cost effective, safe, and high-quality health services.(3) Since it is impossible to tell by looking who is affected by limited health literacy, a “universal precautions approach” should be adopted. Clear communication should be the basis for every health information exchange.
“Universal Precautions” Means… We expect that every encounter is at risk for miscommunication. We create a “shame-free” environment of care. • Treat all patients equally • Anticipate communication barriers • Communicate clearly with everyone • Confirm understanding with everyone • Proactively work to minimize barriersDeWalt DA , Callahan LF, Hawk V, Broucksou KA, Hink A, Rudd R, et al. Health Literacy Universal Precautions Toolkit.Rockville (MD): Agency for Healthcare Research and Quality; 2010.
Other National Health Literacy InitiativesSurgeon General’s Report on Health Literacy – 2008• Limited health literacy is not an individual deficit but a systematic problem that should be addressed by ensuring that all healthcare and health information systems are aligned with the needs of the public and with healthcare providers.Joint Commission• “What Did the Doctor Say?” Improving Health Literacy to Protect Patient Safety, February 2007• Advancing Effective Communication, Cultural Competence, and Patient and Family-Centered Care: A Roadmap for Hospitals, August 2010Agency for Healthcare Quality and Research (AHRQ)• Health Literacy Curriculum for Pharmacists (2012)http://www.ahrq.gov/pharmhealthlit/index.html#pharmlitqi
Which Patients Are at Risk for Low Health Literacy? Anyone in the U.S. Not a function of age, race, education, income or social class Ethnic and racial minority groups Disproportionately affected by low health literacy Carry a disproportionate burden of chronic disease such as diabetes White, native born Americans Comprise the majority of people with low health literacy Older patients, recent immigrants, people with chronic diseases and those with low socioeconomic status Especially vulnerable to low health literacy“The Health Literacy of America’s Adults: Results From the 2003 National Assessmentof Adult Literacy,” U.S. Dept. of Education, National Center for Education Statistics,September 2006.
Why Does Health Literacy Matter?People with limited health literacy skills are more likely to: – Report being in poor health – Participate in negative health behaviors – Hold health beliefs that interfere with adherence – Present in later stages of disease – Be hospitalized/re-hospitalized – Misunderstand instructions needed for self-care – Die at an earlier age, and Are less likely to: – Engage in preventive behaviors or services (e.g. mammograms, flu shots, A1C tests, retinal eye exams, blood pressure and cholesterol checks) – Manage a chronic diseaseNielsen - Bohlman, L., Panzer, A.M., & Kindig, D.A. (Eds.) (2004). Health Literacy: A Prescriptionto End Confusion. Washington, DC: National Academies Press.
Informal Assessment of Health Literacy ProblemsLearn to recognize “red flags” when patients:• Consistently have “headaches” or chronically “forget” their eyeglasses when asked to perform reading tasks.• Often say their hands hurt and will fill out paperwork at home.• Regularly ask family members, friends, or others to read written materials aloud.• Identify medications by looking at the pills themselves, rather than reading prescription labels.• Are unable to explain what medications are for and/or when to take their medication.• Are unable to follow through with lab tests and referrals and frequently miss their medical appointments.• Take their medication incorrectly.Weiss, Barry MD. Health literacy and patient safety: Help PatientsUnderstand. AMA Foundation, May 2007.
A Real Life ExampleMr. G, 45, an Hispanic immigrant, native Spanish languagespeaker, has a job health screening. He is told his pressure ishigh, and he can’t work until it’s controlled. He is given a betablocker and diuretic with instructions to take each “once a day”.One week later he comes to the emergency room. His bloodpressure is very low and he is dizzy. Doctors can’t figure out theproblem. A Spanish speaker asks him how much medicine hetook each day. He replies “22”.Why did this happen??Nielsen - Bohlman, L., Panzer, A.M., & Kindig, D.A. (Eds.) (2004). Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press.
What Can You Do To Confirm that Patients Know How To…..• Read labels• Remember oral instructions• Understand specific instructions (i.e., take on an empty stomach)• Remember to take pills• Differentiate medications (if taking multiple medications)• Plan dosage around meals• Watch for side effects and respond appropriately• Take medications even if symptoms are not present• Track the number of pills left and refill medications when appropriate• Store medications appropriately• Discuss steps needed for specialty medications (i.e., inhalers)
Do the Math!! Numeracy and Communication with Patients• Limited numeracy is frequently unrecognized and limits patients’ ability to communicate with health professionals.• Numerical concepts are important components of such exchanges and include arithmetic and use of percentages, as well as higher level tasks like estimation, probability, problem- solving and risk-assessment.• Patient-centered interactive communication between physicians and patients is recommended to improve the quality of medical care.Apter, Andrea J., MD et al. “Numeracy and Communication with Patients:They Are Counting on Us”, Journal of General Internal Medicine 23 (12): 2117-24.
Challenges to Patient-Clinician CommunicationNumerical concepts: reading numbers, counting, arithmetic operations, estimates, graph reading, percentage, probability, risk1. A patient with unstable asthma is asked to record peak flow readings in the grid provided with the device. She is afraid to tell her doctors that she doesn’t understand how to graph the numbers.2. A patient hospitalized for COPD is discharged with a bottle containing 5-mg prednisone tablets. He is told to take 30 mg in the morning for 5 days. When asked how many pills he should take, he is unsure.3. A 65 year old man weighs 275 pounds. His cardiologist advises him that even a 5% weight loss will greatly improve his health. The man has no ideas how to determine how many pounds he should lose.4. A mother is instructed to give her baby a 1.2 ml. dose of infant acetaminophen. The standard dropper included with medication packaging is marked at 0.4 ml. and 0.8 ml. She doesn’t know how to measure out 1.2 ml.
1. How many calories are contained in ½ cup?2. Is a bigger number better than a smaller one? (Is the answer the same when you’re looking at the fat line and the protein line?)3. What’s the difference between saturated fat and trans fat?4. What % of your daily sodium will you get if you eat the whole container?5. What’s the difference between “sat” fat and “saturated” fat?6. If you’re on a salt free diet, can you eat this? (Please pass the sodium).
Strategies for Improving Understanding through Clear CommunicationKeep in mind that….. Even immediately after leaving their physicians’ offices, patients are able to recall 50% or less of important information just given to them. Nearly half of the information retained is incorrect. We need to confirm patient understanding at every point along the way.Schillinger D, Piette J, Grumbach K, Wang F, Wilson C, Daher C, et al. “Closing the Loop: PhysicianCommunication with Diabetic Patients Who Have Low Health Literacy.” Archives of InternalMedicine. 163 (1): 83-90.
The Teach-Back Method• Teach back (also known as the “interactive communication loop”) is a way to confirm that your patient understands your message/information. It confirms that you have explained to the patient what they need to know in a manner that the patient understands.• Patient understanding is confirmed when they explain it (teach it back to you) in their own words or show you by demonstrating what they have been told.• This is not a test of the patient’s knowledge. This is a test of how well you explained the concept.• If patients cannot restate the information correctly, then explain again by using visuals (pictures, videos, etc.), using simpler words, or seeking assistance from colleagues/staff.DeWalt DA , Callahan LF, Hawk V, Broucksou KA, Hink A, Rudd R, et al. Health Literacy UniversalPrecautions Toolkit. Rockville (MD): Agency for Healthcare Research and Quality; 2010.
Try the Teach-Back Method1. Start with one patient/customer a day. Try the teach back.2. Write down your reflection of the experience.3. Include the following questions: • How did it go? • What would you do differently? • Did the patient/customer seem to mind? • Did the teach-back uncover any miscommunication?
Examples of Approaches When Using Teach Back “I want to be sure that I explained your medication correctly. How and when are you going to take this medicine each day when you are at home? “We covered a lot today about your diabetes, and I want to make sure that I explained things clearly. So let’s review what we discussed. What are three strategies that will help you control your diabetes?” “Now that we’ve talked about adding fiber to your diet, what will you look for the next time you buy cereal?”
Communicating in “Plain Language”Examples:• Avoid – Stay away from; do not use/eat• Diet – What you eat; your meals• Dosage – How much medicine you should take• Hypertension - ??• Screening - ??• Negative - ??• Normal range - ??• Moderate - ??• Postpartum - ??• Precancerous - ??• Risk factors - ??• Carbohydrates - ??
More Strategies You Can Use• Use simple language, sometimes referred to as “living room” language instead of medical terminology.• AA --- Avoid acronyms! And be sure to explain what they mean when you do use them.• Encourage and invite patients/customers to ask questions. You might even say “It’s okay for you to ask me questions.”• Use open ended questions when discussing information with your patients.• Limit the amount of information provided to 3-5 key points. REPEAT key points frequently. Focus on the most critical “need to know” information and convey the “need to do” which is what patients want to hear.
More Ways to Make Information Clear• Help patients with calculations, measurements, and making sense of numerical information.• Introduce yourself and explain your role and the roles of your team in the care process.• Present information in multiple formats (oral, written, visual, video, etc.) to accommodate various learning styles and promote retention.• Prepare commonly asked questions that can be used when patients are reluctant to ask questions. For example, when a pregnant woman says she has no questions, you can say “A lot of women in their (x) month of pregnancy ask about… Is that a question you want me to answer?”
Bottom Line…. Patient-centered communication along the care continuum Healthcare team members avoid medical jargon and use similar wording (such as “high blood pressure” instead of “hypertension” or “chest pain” instead of “angina”). Staff use consistent language whether communicating in person, by phone, in writing or with voice-mail messages. Members of the team conduct proactive outreach and follow up to provide patients with self-management support. All staff use the “teach-back technique” to confirm patients’ understanding.
Sick patient seeks medical help Patient’s condition is Scheduler reminds patient being well managed about what to bring to the office visit Staff at doctor’s office follow up Staff at doctor’s office give regularly with patient patient simple forms and offer help with filling them out Nurse gives patient simple handout and Patient is not As part of assessment, basic tools to use in feeling well doctor listens to patient complying with describe symptoms treatment; staff help plan appointments Doctor describes patients condition using Doctor asks patient plain language to explain the plan back in patient’s own Doctor discusses words Doctor and treatment options with patient agree on patient and solicits treatment plan questionsNew Federal Policy Initiatives (Koh,Howard K., Health Affairs, no. 2, 2012)
In Conclusion• Health literacy is a shared responsibility between patients, healthcare consumers and providers.• We all benefit from information presented in a clear, understandable way regardless of our literacy levels.• Health literacy enables individuals to make decisions and then take actions that promote and maintain their health and the health of their families.
Visit these websites to learn more about health literacy Health literacy news and resources, including updates about health literacy initiatives in NJwww.njhealthliteracy.org Health Literacy and Patient Safety: Help Patients Understandhttp://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf Helping patients to develop good questionshttp://www.ahrq.gov/questionsaretheanswer Information and Tools to Improve Health Literacy and Public Healthwww.cdc.gov/healthliteracy
Selected Health Literacy Resources• Nielsen-Bohlman L, Panzer AM, Kindig, DA, eds. Committee on Health Literacy. Health Literacy – A Prescription to End Confusion. Institute of Medicine, Washington, DC: National Academies Press, 2004.• Zarcadoolas C, Pleasant A, Greer D. Advancing Health Literacy: A Framework for Understanding and Action. Jossey-Bass: San Francisco, CA, 2006.• Osborne, Helen. Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. Jones & Bartlett Learning: Burlington, MA, 2011.