Future Directions in Health Literacy ResearchFuture ...Use Narratives Carefully for Decision Aids...

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Past Is Prologue:Future Directions in Health Literacy Research

David W. Baker, MD, MPHMichael A. Gertz Professor in Medicine

Chief, Division of General Internal MedicineFeinberg School of Medicine,

Northwestern UniversityChicago, Illinois

David W. Baker, MD, MPHMichael A. Gertz Professor in Medicine

Chief, Division of General Internal MedicineFeinberg School of Medicine,

Northwestern UniversityChicago, Illinois

Health Literacy Annual Research ConferenceHealth Literacy Annual Research ConferenceOctober 19, 2008October 19, 2008Washington, D.C.Washington, D.C.

Beyond Plain Language

Simplified Polio Vaccine Brochure Improves Comprehension

TC Davis. Pediatrics ‘96TC Davis. Pediatrics ‘96

What can we do to increase the effectiveness of educational materials?When are print materials not enough?What are the limits of multimedia?What is the role of patient narratives?Can we teach patients less and activate them more?

Reading Fluency

- Prose

- Quantitative

- Document

Reading Fluency

- Prose

- Quantitative

- Document

Prior Knowledge

- Vocabulary

- Conceptual knowledgeof health and healthcare

Prior Knowledge

- Vocabulary

- Conceptual knowledgeof health and healthcare

New Knowledge, Positive Attitudes,

Greater Self-Efficacy, Behavior Change

New Knowledge, Positive Attitudes,

Greater Self-Efficacy, Behavior Change

Improved Health

Outcomes

Improved Health

Outcomes

Complexity and Difficulty of

Printed Messages

Complexity and Difficulty of

Printed Messages

Complexity and Difficulty of Spoken

Messages

Complexity and Difficulty of Spoken

Messages

INDIVIDUAL CAPACITY

HEALTH-RELATED PRINT LITERACY

Ability to understand written health information

Other Factors:Culture and NormsBarriers to change

Conceptual Model of Health LiteracyConceptual Model of Health Literacy

Baker DW, J Gen Intern Med, 2006Baker DW, J Gen Intern Med, 2006

HEALTH-RELATED ORAL LITERACY

Ability to communicate orally about health

HEALTH-RELATED ORAL LITERACY

Ability to communicate orally about health

Diabetes Knowledge Gained According to Literacy Level

2.64.3

6.57.5*

10*12.6*

0123456789

1011121314151617

Inadequate Marginal Adequate

Pre-test score

Post-test score

=4.9†

=5.7†

=6.1†

Kandula N, Baker DW, et al. Pt Ed Couns 09

Very low knowledge at baseline

Similar improvement

But Large Gap Remains

2.64.3

6.57.5

1012.6

0123456789

1011121314151617

Inadequate Marginal Adequate

Pre-test score Post-test score

And gap largest for those with inadequate literacy

Structured LearningStructured LearningLow literate often lack prerequisite knowledge required for higher level learningTo overcome this, we need to:– Define learning objectives– Analyze learning tasks and define

challenges, including background knowledge needed to truly comprehend

– Design instructional sequence• Verbal information, rules, concepts• Problem solving

Low literate often lack prerequisite knowledge required for higher level learningTo overcome this, we need to:– Define learning objectives– Analyze learning tasks and define

challenges, including background knowledge needed to truly comprehend

– Design instructional sequence• Verbal information, rules, concepts• Problem solving

Principles of Instructional Design. Gagné RMPrinciples of Instructional Design. Gagné RM

Informed DecisionSurgical Treatments have equal survival

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

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

What can we do to increase the What can we do to increase the effectiveness of educational materials?effectiveness of educational materials?When are When are print materials not enough?not enough?What are the limits of multimedia?What are the limits of multimedia?What is the role of patient narratives?What is the role of patient narratives?Can we teach patients less and activate Can we teach patients less and activate them more?them more?

Quantitative Skills (Numeracy):Is your blood sugar normal today?

37% Unable to Answer Correctly37% Unable to Answer Correctly

Multimedia for Communicating Complex Ideas

Everyone has sugar in their bloodEveryone has sugar in their bloodIt comes from the food you eat: even It comes from the food you eat: even foods that donfoods that don’’t taste sweet have sugart taste sweet have sugarYour body needs sugar to functionYour body needs sugar to functionBut too much sugar is bad: thatBut too much sugar is bad: that’’s diabetess diabetesYour goal is to have just the right amount Your goal is to have just the right amount of sugar: not too much, not too littleof sugar: not too much, not too little

Volandes, A. E. et al. Arch Intern Med 2007;167:828-833.

Multimedia for Communicating Ideas that Words Alone Cannot Adequately Convey:Deciding Preferences for End of Life Care

Copyright restrictions may apply.

Patient Preferences for Level of Medical Care Before and After Watching Video

Copyright restrictions may apply.

Patient Preferences for Level of Medical Care Before and After Watching Video

Differences in Preferences for Whites, Blacks,

and Latinos Diminished Greatly after

Watching Video

Diabetes Foot Care Module

The Limits of MultimediaGeneral concepts or analogies General concepts or analogies communicated well communicated well May powerfully change attitudesMay powerfully change attitudesInformation goes by very quicklyInformation goes by very quickly

–– Particularly problematic if low Particularly problematic if low knowledge baseknowledge base

–– Elderly have slower information Elderly have slower information processing speedprocessing speed

Overcoming the Fast Pace Overcoming the Fast Pace of Multimedia Programsof Multimedia Programs““Virtual page turnsVirtual page turns””–– Give short segment and stopGive short segment and stop–– Viewer can repeat or go forwardViewer can repeat or go forward–– Medline Plus uses this modelMedline Plus uses this model

Combine with print materialsCombine with print materials–– ““ReverseReverse--engineeredengineered”” print materials print materials

that follow as that follow as ““companion guidecompanion guide””No studies to my knowledge about thisNo studies to my knowledge about this

Alternative to the Didactic

Model of Behavior Change:A Social

Cognitive Approach

Pros and Cons of Patient Pros and Cons of Patient Narratives Are UnclearNarratives Are Unclear

AdvantagesAdvantages–– Role modeling, social learningRole modeling, social learning–– May powerfully influence attitudesMay powerfully influence attitudes

DisadvantagesDisadvantages–– May not be as successful for educationMay not be as successful for education–– Information goes by quicklyInformation goes by quickly–– Distractors, high Distractors, high ““cognitive loadcognitive load””

Optimal placement of narratives unclearOptimal placement of narratives unclear

Use Narratives Carefully Use Narratives Carefully for Decision Aidsfor Decision Aids

Systematic review of the effect of narrative Systematic review of the effect of narrative information on decisioninformation on decision--makingmaking17 studies: 41% 117 studies: 41% 1stst person, 59% 3person, 59% 3rdrd personpersonIn 5 of 17 studies, narratives affected In 5 of 17 studies, narratives affected decision making, especially if 1decision making, especially if 1stst personpersonAuthors called for caution when using Authors called for caution when using narratives as part of interventions to aid narratives as part of interventions to aid medical decisionmedical decision--makingmaking

Winterbottom A, et al. Soc Sci Med 2008Winterbottom A, et al. Soc Sci Med 2008

What can we do to increase the effectiveness of educational materials?When are words not enough?What are the limits of multimedia?What is the role of patient narratives?Can we teach patients less and activate them more?

Just Do It?

Traditional model– Knowledge, Attitudes, Behavior

Action model– Less information, more goal setting– Identify options for behavior change– Patient testimonials

DeWalt DA, et al. Patient Educ Couns 2009

Beyond Teach Back

Learning Mastery TheoryLearning Mastery TheoryBenjamin Bloom developed in 1950sPostulates that people differ in the speed at which they learn information (i.e., the number of repetitions required)Level of mastery is determined by the time devoted to teaching divided by the time required for learningLow literate will usually require more repetition of the material to master it

Benjamin Bloom developed in 1950sPostulates that people differ in the speed at which they learn information (i.e., the number of repetitions required)Level of mastery is determined by the time devoted to teaching divided by the time required for learningLow literate will usually require more repetition of the material to master it

Most Patients Required Multiple

Repetitions to Master Informed Consent

Sudore RL, et al JGIM ‘06

Rate of Mastery Somewhat Higher for Patients with Higher Literacy, but Almost All Need Repetition

Adequate Marginal Inadequate

1 pass 2 passes 3 passes

Table 4. Change in Knowledge Score for Patients in the MDEP + TTG Group

15.416.416.3 16.8

Inadequate/Marginal Adequate

Pre-testPost-testPass 2Pass 3Follow up

∆=-11.3†∆=-8.5 †

†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.

Teach Back Successful for Diabetes Education

Table 4. Change in Knowledge Score for Patients in the MDEP + TTG Group

15.416.416.3 16.8

Inadequate/Marginal Adequate

Pre-testPost-testPass 2Pass 3Follow up

∆=-11.3†∆=-8.5 †

†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.

But What About Long-Term Retention?

Beyond Teach Back

How do we improve retention?Active learning and problem solving?Repetition/reinforcement outside of the healthcare setting?

Beyond the Office

Pre-visitPre-visit VisitVisit Post-visitPost-visit

The Status Quo: Most Info Given at Time of Visit

A New ParadigmA New ParadigmHealth needs assessed before a visitBased on this, patients given materials to prepare them for the discussion.– Print, multimedia, or both– Standardized information– Designed with patients to ensure clarity

of words and conceptsOffice tools help providers communicatePatients sent home with summariesAutomatic reminders sent to patients

Health needs assessed before a visitBased on this, patients given materials to prepare them for the discussion.– Print, multimedia, or both– Standardized information– Designed with patients to ensure clarity

of words and conceptsOffice tools help providers communicatePatients sent home with summariesAutomatic reminders sent to patients

Before the AppointmentBefore the AppointmentDear 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.

Please come to your visit 15 minutes early. The nurse will show you a short video and answer your questions. Dr. Quick will also discuss this with you when you see her.

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.

Please come to your visit 15 minutes early. The nurse will show you a short video and answer your questions. Dr. Quick will also discuss this with you when you see her.

Makoul, Cameron, Wolf, Baker, et al

After the AppointmentAutomated Reminders to Reinforce

Understanding and Adherence

After the AppointmentAutomated Reminders to Reinforce

Understanding and AdherenceDear 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

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

An Alternative ModelAn Alternative Model

Pre-visitPre-visit VisitVisit Post-visitPost-visit

Beyond Readability Formulas

From ReadabilityTo Usability

Mommy, you should be on

Ibutilide for your atrial fibrillation!

ChallengesHow do we demonstrate that patient portals and web sites are problematic for most Americans?How can we assess usability of these without direct usability testing, which is time consuming, expensive, and not feasible for all web sitesCan we develop general guidelines for how to design these to make them more accessible?Can we use online instructional aids or other tools to help increase accessibility and usability?

Bickmore TW, et al. Patient Educ Couns 2009

Use of a Computer Agent to Explain Informed Consent

Computerized “Agent” as Good as Human and Better than Self Study

for Comprehension and Satisfaction

Future Directions in Health Literacy ResearchFuture ...Use Narratives Carefully for Decision Aids...

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