Health Literacy: Making it Clear Elissa Director

1. Health Literacy: Making It Clear
Advancing Health Literacy Conference
June 5, 2012
Elissa Director, M.A.
Health Literacy Specialist
New Jersey Health Literacy Coalition
ehdirector@njhealthliteracy.org
www.njhealthliteracy.org

2. 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

3. 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

5. 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

6. Poor Communication Is Bad Medicine
“As clinicians, what we say does not matter unless
patients are able to understand the information we give
them well enough to use it to make good health-care
decisions. Otherwise, we didn’t reach them, and that is
the same as if we didn’t treat them.”
Regina Benjamin, MD
Surgeon General of the United States

7. 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?

8. 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 Beyond
the Cycle of Costly ‘Crisis Care’”, Health Affairs, January 2012, published on line before print.

9. Sick patient seeks medical help
Patient is discharged, Staff at doctors office ask
and no one follows patient to complete complex,
up with patient confusing forms
Hospital staff give patient a new Doctor explains patient’s
treatment plan, referrals, and condition and treatment plan
prescriptions; staff do not confirm using medical jargon
patient’s understanding
Doctor writes multiple
Patient’s condition gets prescriptions and referrals
worse and patient goes for tests
to the emergency
department
Doctor does not confirm
patient’s understanding
Patient takes
medicines incorrectly
and does not follow
Staff send patient home
up on appointments
No one follows with a complicated set of
up with patient written instructions

10. Cost of Low Health Literacy to the
U.S. Economy
$106 -$238 billion annually
Resulting 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

11. What Does Literacy Enable Us to Do?
 Develop skills
 Acquire information
 Engage effectively in
conducting daily life

12. What are the Fundamental Literacy Skills
Required for the 21st Century?
 Communication Skills (Listening and Speaking)
 Reading with Comprehension
Writing
Numeracy and Technology
Critical Thinking

13. 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

14. “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.

15. The Mismatch…
 88% of the country is
below the proficient level
in health literacy. (National
Assessment of Adult Literacy –
2003)
 Over 1,000 studies have
demonstrated that most
health materials are written at levels of complexity far
beyond the reading skills of average high-school
graduates.

16. Additional Health Literacy Challenges
Population 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 situation
The National Patient Safety Foundation

19. 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 Assessment
of Adult Literacy,” U.S. Dept. of Education, National Center for Education Statistics,
September 2006.

20. 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. NLM
Publication #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.

21. 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.

22. 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

23. 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 to
Health Literacy and Plain Language. September 2009

24. National Action Plan to Improve Health Literacy
U.S. Department of Health and Human Services
May 2010
Some 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.

25. “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 barriers
DeWalt 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.

26. Other National Health Literacy Initiatives
Surgeon 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 2010
Agency for Healthcare Quality and Research (AHRQ)
• Health Literacy Curriculum for Pharmacists (2012)
http://www.ahrq.gov/pharmhealthlit/index.html#pharmlitqi

27. 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 Assessment
of Adult Literacy,” U.S. Dept. of Education, National Center for Education Statistics,
September 2006.

28. 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 disease
Nielsen - Bohlman, L., Panzer, A.M., & Kindig, D.A. (Eds.) (2004). Health Literacy: A Prescription
to End Confusion. Washington, DC: National Academies Press.

29. Informal Assessment of Health Literacy Problems
Learn 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 Patients
Understand. AMA Foundation, May 2007.

30. A Real Life Example
Mr. G, 45, an Hispanic immigrant, native Spanish language
speaker, has a job health screening. He is told his pressure is
high, and he can’t work until it’s controlled. He is given a beta
blocker and diuretic with instructions to take each “once a day”.
One week later he comes to the emergency room. His blood
pressure is very low and he is dizzy. Doctors can’t figure out the
problem. A Spanish speaker asks him how much medicine he
took 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.

32. 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)

33. 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.

34. Challenges to Patient-Clinician Communication
Numerical concepts: reading numbers, counting, arithmetic operations, estimates,
graph reading, percentage, probability, risk
1. 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.

35. 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).

36. Strategies for Improving Understanding through Clear
Communication
Keep 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: Physician
Communication with Diabetic Patients Who Have Low Health Literacy.” Archives of Internal
Medicine. 163 (1): 83-90.

37. 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 Universal
Precautions Toolkit. Rockville (MD): Agency for Healthcare Research and Quality; 2010.

38. Try the Teach-Back Method
1. 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?

39. 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?”

40. 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 - ??

41. 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.

42. 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?”

43. 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.

44. 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 questions
New Federal Policy Initiatives (Koh,
Howard K., Health Affairs, no. 2, 2012)

45. 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.

46. Health Literacy Resources

47. “Universal Precautions Toolkit”
http://www.nchealthliteracy.org/toolkit/

48. Visit these websites to learn more about health literacy
 Health literacy news and resources, including updates about health
literacy initiatives in NJ
www.njhealthliteracy.org
 Health Literacy and Patient Safety: Help Patients Understand
http://www.ama-assn.org/ama1/pub/upload/mm/367/healthlitclinicians.pdf
 Helping patients to develop good questions
http://www.ahrq.gov/questionsaretheanswer
 Information and Tools to Improve Health Literacy and Public Health
www.cdc.gov/healthliteracy

49. 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.