Date post: | 16-Jan-2015 |
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Health Literacy, Numeracy and Shared Decisionmaking
Sue Stableford, MPH, MSB, Director University of New England Health Literacy Institute
Portland, Maine [email protected]
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.