Presented by Sue Stableford, MPH, MSB, on September 7, 2012 at the third annual Center for Health Literacy Conference: Plain Talk in Complex Times.

1. Health Literacy, Numeracy and
Shared Decisionmaking
Sue Stableford, MPH, MSB, Director
University of New England Health Literacy Institute
Portland, Maine
sstableford@une.edu

2. 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

3. 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”

4. 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”

5. 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?

6. 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

7. Health literacy: Foundation of SDM
Capacity to
• Read
• Write
• Compute**
• Understand
• Communicate
• Use health information

8. 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

9. Health literacy affects… everyone
Limited
• knowledge
• skills
• time
Often, poor
• health
• vision or hearing
• support system

10. Most vulnerable population groups
Adults who are:
• Older (esp. ages 65+)
• Hispanic/Latino
• Immigrants
• Poor
• Managing a chronic
physical or mental
health condition

11. The other half of health literacy:
System demands
Health
Consumer Literacy Skills Literacy Complex System Demands
Challenge
Adapted from IOM conceptual framework in
“Health Literacy: A Prescription to End Confusion”, 2003

12. 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

13. 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

14. 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

15. Example from Making the Choice
www.ProstateCancerDecision.org

16. Web Example: Cancer Research Choices

17. 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.

18. 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%)

19. 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.”

20. 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

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

22. Fagerlin A and Peters E in FDA Guide, p 59

24. Web-based Graphical display
From Adjuvant online:
Displays estimated
survival and mortality
risks for breast cancer
patients deciding among
adjuvant therapy choices

25. Matrix Display
Making the Choice at www.ProstateCancerDecision.org

26. Values Clarification Web-Based

27. Values Clarification Summary

28. Print version of same exercise

29. Learn More
www.cancer.gov

30. 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

31. 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

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

33. Do “solutions” work?
Evidence: “Yes…but”
• Understanding  with
better material design
• Understanding risk  if
consistent denominators
and icon displays used
• Understanding  with
professional support

34. 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)

35. 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.