Achieving Health Literacy: a Cornerstone for Health Equity

Achieving Health Literacy: a Cornerstone for Health Equity David W. Baker, MD, MPH Michael A. Gertz Professor in Medicine Chief, Division of General Medicine and Geriatrics Feinberg School of Medicine, Northwestern University

Disclosure No financial or non-financial potential conflicts of interest relevant to this presentation

Objectives Objective #1: To understand the prevalence of low health literacy and the impact of low health literacy on health Objective #2: To understand the contribution of low health literacy to racial and ethnic disparities Objective #3: To understand strategies to address health literacy to improve health outcomes and reduce disparities

93 Million Americans Have Limited Reading Ability 50 40 63 Million 44 % 30 20 30 Million 14 29 13 10 0 Below Basic Basic Intermediate Proficient National Center for Education Statistics, 2003

Test of Functional Health Literacy in Adults (TOFHLA) Pill bottles Appointment slips Informed consents Discharge instructions Health education materials Insurance applications Medication Take as directed Dr. Baker

Prescription Label: If you were going to eat lunch at noon, what time should you take the medicine before lunch? 39% Unable to Answer Correctly

Appointment Slip (Document): When is your next appointment? Where? 24% Unable to Answer Correctly

Quantitative Skills (Numeracy): Is your blood sugar normal today? 37% Unable to Answer Correctly

One Third of Patients at 2 Public Hospitals Had Inadequate Functional Health Literacy 100 80 Marginal Inadequate 60 % 40 20 0 Atlanta LA-English LA-Spanish Williams et al. JAMA 1995

Low Health Literacy by Years of School Completed 70 % 60 50 40 30 20 10 0 Inadequate Marginal 0 to 8 9 to 11 12 > 12 Years of School Completed

Low Health Literacy by Race 60 % 50 40 30 20 10 Inadequate Marginal 0 White Black Hispanic (English) Hispanic (Spanish)

One Third Of Medicare Managed Care Enrollees Had Low Health Literacy % 40 35 30 25 20 15 10 5 0 Inadequate Marginal English Spanish Total Gazmararian et al. JAMA 1999

Prevalence of Low Health Literacy Increased with Age 70 60 50 Inadequate Marginal % 40 30 20 10 0 65-69 70-74 75-79 80-84 >=85 Age Gazmararian et al. JAMA 1999

Low Literacy as a Public Health Problem Disproportionately affects: African-Americans Latinos, especially those with LEP Elderly persons Important contributor to health disparities Increasingly problematic as we shift more tasks to patients to complete Increasing problem for aging population

UnitedHealth Ad c. 2004 16

Relationship of Literacy to Health Care and Outcomes

Low Literate Patients Less Likely to Know Diagnosis 100 Adequate Marginal Low 80 % Know 60 Diagnosis 40 20 0 English Spanish

Low Literate Diabetic Patients Less Likely to Know Correct Management Know symptoms of low blood sugar (hypoglycemia) Know correct action for hypoglycemic symptoms 0 20 40 60 80 100 Percent Williams, et al. Arch Int Med 98

Patients with Hypertension Less Likely to Know Correct Health Behaviors Know exercise blood pressure Know weight loss blood pressure 0 20 40 60 80 100 Percent Williams, et al. Arch Int Med 98

Warning Labels Often Misunderstood 6 th 7 th - 8 th 9 th 79% 86% 88% 35% 66% 78% * 8% 64% 82% * * p<.0001, p<.05 Davis TC. J Gen Intern Med 2006

Patients with Inadequate Literacy More Likely to be Hospitalized 35 30 % 25 20 15 10 5 2 or more 1 admission Adjusted Relative Risk 1.52 (95% CI 1.11-2.06)* 0 Adequate Marginal Inadequate *Adjusted for age, gender, socioeconomic status, and baseline health status Baker DW, et al. JGIM 98

Medicare Managed Care Enrollees with Inadequate Literacy More Likely to Die Percent Alive 50 60 70 80 90 100 Adequate Marginal Inadequate Adjusted HR 1.52 (95% CI 1.26-1.83) Inadequate vs Adequate 0 20 40 60 80 Months Baker DW, Arch Int Med 2007

Health Literacy and Time to All-Cause Mortality and All-Cause Hospitalization among Patients with Heart Failure Peterson, P. N. et al. JAMA 2011

Many People Cannot Interpret Percentages Percent Incorrect Which of the following numbers represents the biggest risk of getting a disease? 1%, 10%, 5% 16% If the chance of getting a disease is 20 out of 100, this would be the same as having a % chance of getting the disease. 30% In the BIG BUCKS LOTTERY, the chances of winning a $10.00 prize is 1%. What is your best guess about how many people would win a $10.00 prize if 1,000 people each buy a single ticket to BIG BUCKS? 40% Lipkus IM. Med Decis Making 2001 25

Addressing Disparities Due to Low Health Literacy

The Way Forward Radical improvements in communication and educational tools Achieve the goal of plain-language writing Identify learning goals and build the knowledge base required for patients to truly understand information needed for decisions Move away from traditional print material (and the electronic equivalent: brochure-ware ) and examine alternative approaches Apply mastery learning principles for material that must be retained Repetition, reinforcement. But, only for essential points. Use technology to support communication before, during, & after visits Email, telephone, and videoconference visits will increase 27

Most Patient Information is Inadequate Non-Hodgkin lymphoma (also known as non-hodgkin s lymphoma, NHL, or sometimes just lymphoma) is a cancer that starts in cells called lymphocytes, which are part of the body s immune system. Lymphocytes are in the lymph nodes and other lymphoid tissues (such as the spleen and bone marrow). American Cancer Society web site, accessed 3/1/2014 28

Typical Material If you have a lung disease, such as chronic obstructive pulmonary disease (COPD) or asthma, there are many lung function tests a doctor can do in his or her office or in a lab. Lung function tests, such as measuring peak inspiratory flow rates (PIFR) and peak expiratory flow rates (PEFR), allow the doctor to measure how much air you can take into your lungs with a deep breath (inhale) and how quickly you can expel the air from your lungs (exhale). Lung function tests assist the doctor in diagnosing breathing problems and in monitoring how well your lungs are working. American Lung Association

Plain Language If you have a lung disease, such as chronic bronchitis, emphysema, or asthma, your doctor may recommend tests to see how your lungs are working. These tests measure how fast you can breath air in and breath air out. These tests help your doctor understand what is wrong with your lungs. Sometimes, your doctor will repeat the test to follow how well your lungs are working.

34 It Is Essential to Develop Materials in Partnership with Patients

The Yellow MarkerTest 35

McCarthy D, Baker DW, et al. EmergMed Int2012

Quantitative Skills (Numeracy): Is your blood sugar normal today? 37% Unable to Answer Correctly

Multimedia Program to Teach Patients with Low Literacy About Diabetes

Building Blocks Required to Understand Blood Sugar Goals Everyone has sugar in their blood It comes from the food you eat: even foods that don t taste sweet have sugar Your body needs sugar to function But too much sugar is bad: that s diabetes Your goal is to have just the right amount of sugar: not too much, not too little

What Do Patients Need to Know Before They Are Ready for Key Messages? Your chances of long-term survival with early breast cancer are the same with lumpectomy and XRT and mastectomy Breast cancer starts as a lump in the breast Parts of the lump can break off and spread to the body Only this spread through the body kills women with breast cancer Surgery does not treat cancer that has spread through the body Surgical Treatments have equal survival Informed Decision

The Way Forward Radical improvements in communication and educational tools Achieve the goal of plain-language writing Identify learning goals and build the knowledge base required for patients to truly understand information needed for decisions Move away from traditional print material (and the electronic equivalent: brochure-ware ) and examine alternative approaches Apply mastery learning principles for material that must be retained Repetition, reinforcement of essential points. Use technology to support communication before, during, & after visits Email, telephone, and videoconference visits will increase Teach back Teach to goal 44

% 100 80 60 40 20 1 pass 2 passes 3 passes Most Patients Required Multiple Repetitions to Master Informed Consent Sudore RL, et al JGIM 06 0

100 80 Rate of Mastery Somewhat Higher for Patients with Higher Literacy, but Almost All Needed Repetition 1 pass 2 passes 3 passes 60 % 40 20 0 Adequate Marginal Inadequate

But What About Long-Term Retention? Table 4. Change in Knowledge Score for Patients in the MDEP + TTG Group 16 Pre-test Post-test Pass 2 15.4 16.3 16.4 16.8 12 8 Pass 3 Follow up 9.1 5.0 12.3 =-8.5 =-11.3 5.7 8.3 4 2.7 0 Inadequate/Marginal Adequate The absolute change from TTG pass 3 to follow-up, where the absolute change of the inadequate/marginal group (-11.3) is compared to the absolute change of the adequate group (-8.5); p-value<0.01. Kandula, Baker, et al. Pt Education and Counseling, 2009

The Status Quo: Most Info Given at Time of Visit Previsit Visit Postvisit

A New Paradigm Health needs assessed before a visit Based on this, patients given materials to prepare them for the discussion. Office tools help providers communicate Patients sent home with summaries Automatic reminders sent to patients

Before the Appointment Dear Mr. Lucky, Thank you for taking the time to complete your health check. This showed that you have never been screened for colon cancer. Screening for colon cancer can save your life. I sent you some materials to read and a video you can watch about this. You can also come to your visit 15 minutes early and the nurse will show you the video and answer your questions. I will discuss this with you after that. Best regards, Dr. Quick

After the Appointment Automated Reminders to Reinforce Understanding and Adherence Dear Mr. Lucky, I wanted to tell you again how important it is to be screened for colon cancer. Don t wait! Be sure to schedule your colonoscopy as soon as possible. Remember, this test could save your life. Sincerely, Dr. Quick

Technology Available to Assist Communication Patient portal to electronic health record Video monitor in all exam rooms Electronic patient education materials Videoconferencing 55

Recommendations Make sure your health educators understand how to identify or develop plain language materials Focus on essential information patients need for self-management and decision-making Give patients educational information prior to visit Use teach back and teach to goal : Check comprehension, correct errors, repeat Reinforce key learning goals through face to face education or media (e.g., email, podcasts)

Success Stories

Randomized Trial of Intensive Telephone Education for Patients with Heart Failure and Low Health Literacy Baker DW, et al. J Health Comm, 2011

Single Educational Session (~ 40 minutes) Medication adherence; salt avoidance; exercise; daily self-check; and action planning in case of exacerbation Caring for Your Heart: Living Well with Heart Failure Given a new digital scale Randomization Brief Education Intervention (BEI) No further intervention Teach to Goal (TTG) 5-8 calls over the next month to reinforce key learning goals Patients taught adjusted-dose diuretics

Self-Efficacy and Self-Care Behaviors Improved More in the TTG Group Baseline Absolute Change: Baseline to Follow-Up BEI TTG BEI TTG Net Difference in Change Between Groups p Self-Efficacy (10 items) 5.0 4.8 +0.38 +1.01 0.63 (0.16, 1.10) 0.009 Self-Care Behaviors (10 items) 4.9 4.4 +1.8 +3.2 1.4 (1.05, 1.74) < 0.001 Baker DW, et al. J Card Fail 2011

HF-Related Quality of Life Improved in the TTG Group but Not in the BEI Group Baseline Absolute Change: Baseline to Follow-Up BEI TTG BEI TTG Net Difference in Change Between Groups Heart Failure Symptom Scale (0-100 Scale, higher scores better) 64.8 58.6-0.6 +6.7 7.3 (4.3, 10.3) < 0.001 p Baker DW, et al. J Card Fail 2011

HF-Related Hospitalizations Were Less Common in the TTG Group for Patients with Inadequate of Marginal Literacy TTG group had fewer hospitalizations TTG group had more hospitalizations DeWalt D, et al. Circulation 2012

Randomized Trial of Outreach to Improve Colorectal Cancer Screening at a Community Health Center Baker DW, et al. JAMA IntMed 2014

Study Aim To determine whether a multifaceted outreach program to improve adherence to annual FOBT increased the proportion of patients who completed FOBT within 6 months of their due date compared to those receiving usual care Usual care consisted of point-of-care electronic reminders, protocols for MAs to distribute FOBTs at visits, and financial incentives for quality that included CRC screening 64

Initial Outreach 65

Low-Literacy FIT Instructions 66

2-Week Reminder 67

3-Month Navigator Call 68

Completion of CRC Screening within 6 months of due date Intervention (n=225) Usual Care (n=225) Completed FIT/FOBT* 185 (82.2) 84 (37.3) Completed Colonoscopy 6 (2.7) 6 (2.7) Completed Either CRC Screening Test* * p < 0.001 by chi-square test 191 (84.9) 90 (40.0) This does not include pa ents who had a posi ve FIT/FOBT and subsequently underwent diagnostic colonoscopy. Most patients had a clinic condition for which a diagnostic colonoscopy was done. 69

Completion of FOBT by Time from Initial Due Date Time Completed Intervention (n=225) Usual Care (n=225) Prior to due date 23 (10.2%) 25 (11.1%) 0-2 weeks 89 (39.6%) 8 (3.6%) >2 to 13 weeks 54 (24.0%) 27 (12.0%) >13 to 26 weeks 19 (8.4%) 24 (10.7%) Total completed 185 (82.2%) 84 (37.3%) 70

The main problem with communication is the assumption that it has occurred. George Bernard Shaw

Thank You Questions?