Strategies to Address Health Literacy Susan Cosgrove, MPA, CPHQ Health Care Improvement Foundation Free Clinic Association of Pennsylvania Annual Conference May 5, 2017

The single biggest problem in communication is the illusion that it has occurred. George Bernard Shaw Guiding principle for today’s presentation—we’ll talk about how to address this problem and prevent the illusion.

Objectives Describe health literacy: what it is, and why it matters Implement specific strategies to enhance communication Identify organizational strategies for prioritizing health literacy

How Do We View Our Patients?

“Had to explain that band-aids do not cure anything, but just cover up a wound. The patient in question had tried to cure her recently diagnosed Type-II diabetes by sticking band-aids all over herself.”

Patients are scared. “I was scared when my doctor told me I was sick, and I wasn’t sure how to take care of myself. I was willing to try anything to get my health back.” “Recently diagnosed” patients may not yet have the knowledge to self-manage their disease. Diagnoses of chronic illnesses can be scary and overwhelming. Folks may feel desperate and willing to try anything to cure their illness.

“I was explaining the treatment to the husband of a patient about to be discharged. He kept nodding and agreeing with me, but I knew it was flying over his head. Turned out a fundamental problem was that I was describing the drugs as ‘tablets’ and he had no clue what those were.”

They feel overwhelmed. “My spouse was leaving the hospital, and I wanted to be able to care for her. But the doctor gave us a lot of information, in a short period of time. She seemed rushed so I didn’t want to ask questions.” “I knew it was flying over his head.” If you know this—if you can see this happening and identify it—why aren’t you adjusting your communication tactics to meet your patients’ needs? At least this doctor admits there’s a “fundamental problem” here; I just don’t think it’s with the patient or the patient’s husband.

“I once had to use the word ‘dick’ instead of penis because the patient did not know the proper term for his genitalia.”

They experience shame. “I went to the doctor and he used words I didn’t understand without explaining what they meant. I was too embarrassed to ask.” “Proper term” is very judgmental. I would argue that the “proper term” to use for a body part is one that the patient understands. I get the frustration felt by doctors, the need to deflect and bring levity and even vent about challenges with patients. But the patients are just as frustrated, and they’re also often sick, scared, foggy from medications, feeling rushed, embarrassed… What’s contributing to this breakdown in communication?

The healthcare process is complex… Inspired by the “Continuum of Confusion,” American Medical Association Foundation, 2007

…and communication challenges make it harder to navigate. “continuum of confusion” Adapted from: Koh, et al., 2012

Health Literacy Health literacy is the ability to find, understand, evaluate, communicate, and use health information to make informed decisions about your health. Health literacy involves medications, health education materials, verbal instructions, explaining your health concerns, and clarifying what actions you need to take to improve her health and why you should do them From http://healthliteracy.com/tips.asp?PageID=10117

Personal and Individual Factors System and Situational Factors Contributing Factors Personal and Individual Factors System and Situational Factors Experience with health system General literacy Cultural and language factors Stress and emotional factors Fatigue, illness, medications Social determinants of health Complexity of information How information is communicated Signage, directions, navigation Time Notice what’s not on this slide: occupation.

Signs of Misunderstanding Incomplete, inaccurate forms Insurance eligibility problems Failure to navigate: “no shows,” late arrivals, frequently missed appointments, difficulty following signs or directions Lack reading speed

Signs of Misunderstanding 80%-90% ask others (patients, staff) for assistance Medication non-adherence Lack follow through with tests, x-rays, or referrals State that “I forgot my glasses” or ask to “read at home” Has no questions

You Can’t Tell By Looking Certain groups are more likely to show signs of low health literacy… You are at greater risk if you are: Black Hispanic An older adult A non-native English speaker …but almost everyone is at risk.

Not having the needed skills can lead to: Health care cost 4x More trips to the hospital 6% More days in the hospital 2 More likely to visit a doctor 1.5x As many prescriptions 3x Low health literacy leads to: Lower health knowledge; less healthy behaviors. Under-utilization of preventive services Poorer health outcomes Needless patient suffering Greater health costs Over a decade of research Financial cost to patients, providers, and payers Other costs to patients: more time spent in poor health Wiiliams, Baker, Honig, & Lee, 1998 Williams, Baker, Parker, & Nurss, 1998 Agency for Healthcare Quality Research, 2015 Nielsen-Bohlman & Institute of Medicine, 2004 Schwartzberg, Van Geest, & Wang, 2005 National Assessment of Adult Literacy, U.S. Department of Education, 2003 Partnership for Clear Health Communication at the National Patient Safety Foundation

Health literacy is a stronger predictor of individual health status than age, income, employment status, education level or racial/ethnic group. Why focus on health literacy? Health Literacy and Patient Safety: Help Patients Understand, American Medical Association Foundation, 2007

What is it like? The following passage simulates what a reader with low general literacy sees on the printed page. Read the entire passage out loud. You have 1 minute to read. Hint: The words are written backwards and the first word is “cleaning”

GNINAELC – Ot erussa hgih ecnamrofrep, yllacidoirep naelc eht epat sdaeh dna natspac revenehw uoy eciton na noitalumucca fo tsud dna nworb-red edixo selcitrap. Esu a nottoc baws denetsiom htiw lyporposi lohocla. Eb erus on lohocla sehcuot eht rebbur strap, sa ti sdnet ot yrd dna yllautneve kcarc eht rebbur. Esu a pmad tholc ro egnops ot naelc eht tenibac. A dlim paos, ekil gnihsawhsid tnegreted, lliw pleh evomer esaerg ro lio. Directions to facilitator: It may be hard to get the group reading out loud, So start reading with them, Cleaning…To (pause) assure (pause)….Keep them going through the entire passage. You may have to read a word out loud as they falter. Some will start to read it faster and you can comment, “Aha, someone is getting on to it faster, they are becoming a good reader while the rest of us are struggling”… They may have particular trouble deciphering capstan and also brown-red oxide is there as a “typo” - you can help them over those spots... Get them through the entire passage - there should be a lot of laughter - and then go on to the next slide

Discussion Questions What was is like to read this? How did it make you feel? How did it make you feel when someone near you was reading faster? How do you clean a capstan? Can you answer this question? Why are you having trouble answering the question?

Strategies to Improve Communication

Communicate clearly. Use plain language, or “living room language,” and avoid using jargon. How would you explain something to your relative (parent, child, sibling, grandparent, cousin) or friend?

Communicate clearly.

Confirm understanding. Teach-back is one communication technique you can use to confirm understanding—but it’s not a test of the patient. Providers ask, “I want to be sure I explained this to you clearly, can you tell me what you’ll do when you get home?” Make it a test of your communication skills, rather than patient knowledge. Patients can ask for teachback, even if it’s not provided: “I want to make sure I understand what I need to do to stay healthy. When I get home, I will…” or if you don’t understand something that’s being said, you might say, “This is new to me. Will you please explain that to me one more time?”

Confirm understanding. Clarify Assess Explain Here is a schematic of the teach back method. The idea is to explain the self-management process, then assess the person’s knowledge by asking them to teach it back to the clinician. The clinician can then clarify if the patient doesn’t quite have it down. This cycle can be repeated until there is a shared understanding.

Teach Back Limit to the 3-4 most important things you want the patient to remember or do We have gone over a lot of information. In your own words explain to me what we have discussed? How will you make it work at home? What will you tell your spouse about your condition? What do you think will work best for you at home? “I want to make sure I explained it correctly. Can you tell me in your words how you understand the plan?” Or tell me how you will take your medications? When you are confirming patient understanding, it’s best to avoid questions such as “Do you understand?” or “Do you have any questions?” That strategy usually leads to the answer of “No”. Rather we want to say, “Tell me what you’ve understood about this medicine?” or “I want to make sure I have explained your medicine clearly, can you tell me how you think you will take this medicine?”

Teach-back Simulation Give teach-back a try! Practice teach-back with one or two patients every day.

Empower patients. Ask Me 3: good questions for your good health Be More Involved in Your Health Care: tips to use before, during, and after your medical appointment to make sure you get the best possible care My Questions for This Visit: use to list the questions you want to ask during your medical visits. National Patient Safety Foundation, Ask Me 3 Be More Involved in Your Healthcare, Agency for Healthcare Research and Quality, 2012. My Questions for This Visit, Agency for Healthcare Research and Quality, 2014.

Empower patients. Involve patients in the development of educational materials. Identify your target audience and ask them for input. Your document is in plain language when your target audience says it is.

Becoming a Health Literate Organization

Create a Blame Free, Shame Free Environment. Screening has the potential for harm and is currently not recommended. Create an environment where employees feel comfortable asking questions—a blame free, shame free environment. Making information easier to understand will benefit everyone. Concern about “dumbing it down” too much—no one has ever said, “this pamphlet is too easy to understand!” It’s not “dumbing it down” it’s making information easy to understand for everyone. If patients want more advanced level materials, I’m sure you have plenty of education materials written at above a high school reading level that you can give them. Agency for Healthcare Research and Quality, Universal Precautions Toolkit, 2012.

Implement the Ten Attributes. Become a health literate organization. Brach, et al. 2012, Ten Attributes of Health Literate Health Care Organizations

Become a health literate organization. Leadership makes health literacy integral to mission, structure, and operations Integrates health literacy into planning and evaluation Prepares the workforce to be health literate and monitors progress Includes populations served in the design, implementation, and evaluation of health information and services Meets the needs of a wide range of populations while avoiding stigmatization Uses health literacy strategies in communications and confirms understanding Provides easy access to health information and navigation assistance Designs and distributes content that is easy to understand and act on Addresses health literacy in high risk situations Communicates clearly what health plans cover and what individuals will have to pay for services #10 is most applicable for employers, but you could pick any one of these. Brach, et al. 2012, Ten Attributes of Health Literate Health Care Organizations

Start small. It takes years to create sustainable change. What’s your first step?

Good Communication Takes Collaboration

Collaborate for good communication. Health literacy and communication go beyond any one person, profession, program, or organization. Health literacy and good communication go beyond any one person, profession, program, or organization. Collaborate with your audience, colleagues, and community. Together, we can improve health understanding. Osborne, Health Literacy: What It Is, Why It Matters, How You Can Help, 2015

Collaborate for good communication. Collaborate with your audience, colleagues, and community. Osborne, Health Literacy: What It Is, Why It Matters, How You Can Help, 2015

Help patients break through the continuum of confusion. Adapted from: Koh, et al., 2012

Questions? Susan Cosgrove, MPA, CPHQ, Team Leader of Health Literacy Initiatives scosgrove@hcifonline.org

About the Health Care Improvement Foundation (HCIF) An independent, nonprofit organization that drives high-value health care through stakeholder collaboration and targeted quality improvement initiatives Focused on health literacy since 2010, with funding from the Pennsylvania Department of Health Lead organization in the formation of the Pennsylvania Health Literacy Coalition What you’ll learn from today’s presentation: What is health literacy and why does it matter? What can I do to improve health communication for my employees? How can the Pennsylvania Health Literacy Coalition support my health literacy efforts?

Resources American Medical Association Foundation, 2007. Health Literacy and Patient Safety: Help Patients Understand. Available from http://www.ama-assn.org/ama/pub/about- ama/ama-foundation/our-programs/public-health/health- literacy-program/health-literacy-kit.page? CommunicateHealth, 2012. Health Literacy Infographic. Retrieved from http://communicatehealth.com/ideas/insights/ U.S. Department of Education, 2003. National Assessment of Adult Literacy. Available from https://nces.ed.gov/naal/

Resources National Center for Health Marketing, 2009. Plain Language Thesaurus for Health Communication. www.plainlanguage.gov/populartopics/health_literacy/thesaurus_v-10.doc Centers for Disease Control and Prevention, 2015. Everyday Words for Public Health Communication. https://www.cdc.gov/other/pdf/everydaywordsforpublichealthcommunication_final_11-5-15.pdf

Resources Partnership for Clear Health Communication at the National Patient Safety Foundation. More information available from http://www.npsf.org/ Agency for Healthcare Research and Quality, 2012. Be More Involved in Your Healthcare. Retrieved from http://www.ahrq.gov/patients-consumers/patient- involvement/ask-your-doctor/tips-and-tools/beinvolved.html Agency for Healthcare Research and Quality, 2014. My Questions for This Visit. Retrieved from http://www.ahrq.gov/patients-consumers/patient- involvement/ask-your-doctor/tips-and- tools/questioncard.html

Resources Agency for Healthcare Research and Quality, 2010. Health Literacy Universal Precautions Toolkit. Retrieved from http://www.ahrq.gov/sites/default/files/wysiwyg/profe ssionals/quality-patient-safety/quality- resources/tools/literacy- toolkit/healthliteracytoolkit.pdf Institute of Medicine, 2012. Ten Attributes of Health Literate Health Care Organizations. Retrieved from http://www.ahealthyunderstanding.org/Portals/0/Doc uments1/IOM_Ten_Attributes_HL_Paper.pdf

Resources Benz, J., 2015. Seven tips to boost employees literacy and engagement in healthcare. Retrieved from http://hr.blr.com/HR-news/Benefits-Leave/Healthcare- Insurance/Employee-health-literacy-engagement# Koh, et al., 2012. New federal policy initiatives to boost health literacy can help the nation move beyond the cycle of costly ‘crisis care’. Health Affairs, 31(2). Loewenstein, G., et al., 2013. Consumers’ misunderstanding of health insurance. Retrieved from http://www.hks.harvard.edu/fs/bmadria/Documents/Madrian %20Papers/Consumers%20Misunderstanding%20of%20H ealth%20Insurance.pdf