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Patient Narratives in Decision Aids


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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.

Published in: Health & Medicine
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Patient Narratives in Decision Aids

  1. 1. Patient Narratives in Decision Aids Diana Stilwell Chief Production Officer March 2013
  2. 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. 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. 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. 5. Review of evidence• Recent systematic reviews• Characteristics of study settings, populations, aims, interventions, etc.• Compare evidence to our approach• General trends
  6. 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. 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. 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. 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. 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. 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. 12. Key findings• Narratives are powerful• Mechanisms are not well understood• Not all evidence is relevant to our work
  13. 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. 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. 15. Facts and statistics? College of Radiology
  16. 16. Implications for our work• Be aware of the potential impact• Use approaches that mitigate risk of bias
  17. 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. 18. Blend narratives and facts• Factual information complements narrative • Data displays • Comparison tables • May mitigate bias• Attend to and balance framing effects
  19. 19. Ask patients about balanceData collected from patients at Dartmouth-Hitchcock Medical Center, 2005-2009
  20. 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. 21. Thank you! 21