Health Literacy, Numeracy and Shared Decisionmaking

Sue Stableford, MPH, MSB, Director University of New England Health Literacy Institute

Portland, Maine sstableford@une.edu

Preview

• ACA and shared decisionmaking

• Health literacy, numeracy, and risk communication

• Challenges and emerging solutions for decision aids

• Need for research and action

• Resources

Cover: IOM report - Health Literacy Implications for Health Care Reform

Affordable Care Act Sec 3506

Program to Facilitate Shared Decision-Making

“…facilitate collaborative processes between patients, caregivers or authorized representatives, and clinicians that engages … in decisionmaking, provides … information about trade-offs among treatment options, and facilitates the incorporation of patient preferences and values into the medical plan”

Shared decisionmaking (SDM)

• Key concept: “Preference-sensitive” care – Possible harms and benefits

closely matched

– Patient values play critical role

• Decisions: – Screening (e.g. PSA)

– Treatment (e.g. breast cancer)

• Decision “aids” or “supports”

Shared decisionmaking enhances care quality

• Linked with – patient-centered care

– safety and quality of care

– medical home model of care

– patient satisfaction

• Do all patients want to share decisions?

Example: Why SDM matters

Prostate cancer treatment choices: Wilt T et al. Radical Prostatectomy versus Observation for Localized Prostate Cancer. N Engl J Med, July 2012. – 12 year randomized clinical trial of low-risk disease

patients

– Surgery did not reduce all-cause or prostate-cancer mortality

– Urinary incontinence and erectile dysfunction significantly more common with surgery

Health literacy: Foundation of SDM

Capacity to

• Read

• Write

• Compute**

• Understand

• Communicate

• Use health information

Literacy skills of American adults

• 43% Basic or below basic prose literacy skills • 55% Basic or below basic numeracy skills

Health literacy skills: 12% Proficient

Health literacy affects…

Limited • knowledge • skills • time

Often, poor • health • vision or hearing • support system

everyone

Most vulnerable population groups

Adults who are:

• Older (esp. ages 65+)

• Hispanic/Latino

• Immigrants

• Poor

• Managing a chronic physical or mental health condition

The other half of health literacy: System demands

Consumer Literacy Skills Complex System Demands

Health

Literacy

Challenge

Adapted from IOM conceptual framework in “Health Literacy: A Prescription to End Confusion”, 2003

Literacy & numeracy challenges expand in SDM

• Amount and complexity of information (cognitive load)

• Unfamiliar numeracy concepts (statistical risk)

• Uncertainty of outcome applied to self

• Emotional complexity

• Possible poor health and depression

Helping patients understand

Use proven tools and methods 1. Plain language and

plain numbers

2. Clear data displays and values clarification strategies

3. Narrative examples

4. ‘Coaching’ and Teachback

5. User engagement

www.FDA.gov

1. Plain language

Goal: cognitive effort

• Limit content

• Structure/organize

• Write in clear, everyday terms [‘chances’ instead of ‘risk’]

• Design for fast visual access

• Consider culture

Example from Making the Choice www.ProstateCancerDecision.org

Web Example: Cancer Research Choices

Plain numbers

• Frequencies, maybe % - not decimals, not fractions, not ratios

• Baseline risk

• Absolute, not just relative, risk

• Denominators and time frames constant for comparison

• Positive and negative frames

Fagerlin A, Zikmund-Fisher B, Ubel P. Helping Patients Decide: Ten Steps to Better Risk Communication. JNCI, 2011. 103:1436-43 Woloshin S and Schwartz LM. Communicating Data About the Benefits and Harms of Treatment: A Randomized Trial. Ann Intern Med, 2012.

Relative vs absolute risk

• Relative Risk: – “Patients who used our miracle drug every day

increased improved their chances of ___ by 50%.” (no baseline, no timeframe)

• Absolute Risk: – “When used daily for a year, our miracle drug

increased the chances of ___ from 1 in 100 to 2 in 100” (or from 1% to 2%)

Constant denominators and “framing”

• Denominators – Choose 100 or 1000 when possible and use

consistently to compare treatments or outcomes

• Framing: Positive and negative – “50 out of 1000 women (or 5%) who take this

drug get a skin rash. This means that 950 (or 95%) do not.”

2. Visual Displays of Data

Best practices – Numbers

– Icon display

– Simple graph

– Instructions on a table

From AHRQ consumer booklet:

“ACE Inhibitors” and “ARBs”

To Protect Your Heart? A Guide

for Patients Being Treated for

Stable Coronary Heart Disease

Risk chart from Fagerlin, Zikmund-Fisher, Ubel. JNCI, October 2011.

Fagerlin A and Peters E in FDA Guide, p 59

Web-based Graphical display

From Adjuvant online: Displays estimated survival and mortality risks for breast cancer patients deciding among adjuvant therapy choices

Matrix Display

Making the Choice at www.ProstateCancerDecision.org

Values Clarification Web-Based

Values Clarification Summary

Print version of same exercise

Learn More

www.cancer.gov

3. Narrative examples framed with care

• May help with accurate mental models and ‘gist’ understanding

• Can introduce bias

• Can overpower data – Disproportionate effect

on adults with limited numeracy skills

4. Coaching, Teachback, “Guided Imagery”

Verbal exchange structured to maximize understanding • Clinician explains: “Choice, option and decision talk” (Elwyn)

• Patient tells or demonstrates

• Clinician re-explains as needed

• Use of written or media tools (decision aids or DAs)

Elwyn G et al. J Gen Intern Med, 2012 Wolf M. Chpt 9, Health Literacy, in FDA Guide, Communicating Risks and Benefits

5. User Engagement

•“Collaborative composing” (Zarcadoolas) • User-centered design (usability.gov) • Audience testing

Do “solutions” work?

Evidence: “Yes…but”

• Understanding with better material design

• Understanding risk if consistent denominators and icon displays used

• Understanding with professional support

Resource Support

• Research literature (Medical Decision Making)

• IPDAS – International Patient Decision Aid Standards

• Professional and University-based groups – SMDM: Society for Medical Decision Making

– Shared decision centers; e.g. Ottawa and Dartmouth

• PCORI – Patient-Centered Outcomes Research Institute (ACA)

Summing Up: A Recap

• Only 12% of adults have Proficient health literacy skills

• Health information with numbers is hard for most to understand

• SDM adds extra demands and complexity

• Lowering the burden to understand can help patients engage with providers in wiser care choices

• Best practice is evolving. We can use current guidelines.