Diana Stilwell, MPH, chief production officer at the Informed Medical Decisions Foundation, walks through the role of narratives in decision aids and how the available evidence relates to the Foundation approach. This presentation was part of a Shared Decision Making Month webinar -- The Power of Narratives: How They Shape the Way Patients Make Medical Decisions.

1. Patient Narratives in Decision Aids
Diana Stilwell
Chief Production Officer
March 2013

2. Overview
• Role of narratives in decision aids (DAs)
• Concerns about their use
• Evidence and relevance to IMDF approach
• How our approach addresses some common
concerns

3. Narratives play several roles in DAs
• Engage
• Inform
• Model behavior
• Get informed
• Weigh trade-offs
• Clarify values and goals
• Affective forecasting (alternative futures)

4. Concerns about narratives in DAs
• Too specific: focus on subset of what
mattered to featured patients; premature
closure of options
• Too distracting: disregard facts and data
• Too vivid: emotion is more memorable; rare
outcomes seem more likely

5. Review of evidence
• Recent systematic reviews
• Characteristics of study settings, populations,
aims, interventions, etc.
• Compare evidence to our approach
• General trends

6. Settings and populations
Published research* IMDF approach
• Experimental/hypothetical • Focus groups of real
• College students (6/20) patients
• General population (10/20) • Real-world clinical practice
• Current patients (4/20)
*Winterbottom (2008), Bekker/IPDAS (2012)

7. Narrative format
Published research IMDF approach
• Print (10/19) • Video of real patients
• Fiction (8/8 reported) • “Non-fiction”; in patients’
• Non-fiction (0/8 reported) own words
• Video (8/19)
• Actors (6/8)
• Patients (2/8)
• In-vivo (1/19)

8. Types of decisions
Published research IMDF approach
• Cancer screening (7/20) • Preference-sensitive
• Hypothetical (5/20) • Patient goals and concerns
• “Real life” (5/20) major factor
• Often a ‘dominant’ option
• Not related to healthcare
(3/20)

9. Purpose of intervention
Published research IMDF approach
• Increase knowledge • Increase knowledge
• Change attitudes • Improve accuracy of risk
• Influence decisions about perceptions & expectations
screening or preventive • Improve value concordance
behaviors (equally distributed) • Model SDM process

10. Narrative content
Published research IMDF approach
• Manipulated to include • Patients’ voices and
specific content (9/18 reported): experiences
• Highlight pros of “preferred”
option or risks of • Aim for balance
“undesirable” option (e.g., Cox & • Careful selection, not
Cox, 2001)
• Align proportion of good/bad
scripting
narratives with outcome • All reasonable rationales —
probabilities (e.g., Ubel, et al., hear from those who chose
2011)
• Fear appeals (e.g., Morman, “the road less traveled”
2000)

11. Key outcomes
• Framing effects (gain/loss)
• Many report little influence on decisions—but
in some cases, narratives did appear to affect
decisions or intentions
• Screening interest/intent
• Risk perceptions
• End of life care preferences

12. Key findings
• Narratives are powerful
• Mechanisms are not well understood
• Not all evidence is relevant to our work

13. Narrative is everywhere
“…(Reality TV) promote(s)
unrealistic expectations,
and to get patients to
have realistic
expectations is one of the
hardest things we do in
our practice.”
Peter B. Fodor, MD, President, American Society of Plastic Surgeons

14. Usual care
“When (the surgeon)
told me that if it were
his arm, he’d want the
surgery done, I signed
the consent form.”
Health Affairs, 31, no.8 (2012):1895-1899

15. Facts and statistics?
http://www.mammographysaveslives.org/Facts.aspx
American College of Radiology

16. Implications for our work
• Be aware of the potential impact
• Use approaches that mitigate risk of bias

17. Carefully “curate” narratives
• Clinically & demographically representative
• Common preferences, goals, values
• Less common but reasonable perspectives
• Acknowledge emotional component
• Model how others weigh trade-offs

18. Blend narratives and facts
• Factual information
complements narrative
• Data displays
• Comparison tables
• May mitigate bias
• Attend to and balance
framing effects

19. Ask patients about balance
Data collected from patients at Dartmouth-Hitchcock Medical Center, 2005-2009

20. Wrap up
• Essential ingredient? No
• Keep learning how best to use them
• Systematic curating—attention to content,
purpose, framing
• Evaluate
• Assess impact of switching from DVD to
web/mobile

21. Thank you!
dstilwell@imdfoundation.org
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