All Stories are Not Alike: A Taxonomy of Patient Narratives

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Victoria Shaffer, PhD, describes the the pros and cons of narratives and then explains her work to develop a system of classification for narratives as part of the solution. Victoria provides an overview of the narrative taxonomies she and her colleague have developed.

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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All Stories are Not Alike: A Taxonomy of Patient Narratives

  1. 1. All Stories Are Not Alike: A Taxonomy of Patient Narratives Victoria A. Shaffer, PhD University of Missouri 1
  2. 2. The Problem• Narratives are good • Vivid and engaging • Inherent credibility • More powerful than traditional information formats• Narratives are bad • Change healthcare decisions • Bias decisions by changing how people perceive risk • Make rare outcomes appear equally likely as common ones Bekker et al., 2012 IPDAS; Winterbottom et al., 2008 2
  3. 3. Are patient storiesharmful or helpful? 3
  4. 4. The Solution• Prior work treated narratives as if they were identical• Narratives are multidimensional• Must develop a system for classifying and defining narratives• Identify associated outcome measures 4
  5. 5. Taxonomy Overview1. The purpose of the narrative2. The content of the narrative3. The evaluative valence of the narrative 5
  6. 6. Narrative Purpose1. Provide information2. Make healthcare materials more engaging3. Model targeted behaviors4. Persuade people to engage in healthy behaviors or cease unhealthy behaviors5. Provide comfort to patients and families 6
  7. 7. Narrative Purpose 7
  8. 8. Narrative Content1. Outcome narratives2. Experience narratives3. Process narratives 8
  9. 9. Narrative Content 9
  10. 10. Outcome Narratives• “I chose to have a lumpectomy and radiation, and after 10 years, I’m still cancer free” • Outcome information about local recurrence• “I really regret my choice to have a lumpectomy. I am constantly checking for new lumps and worrying about whether the cancer will return” • Psychological outcome information 10
  11. 11. Narrative Content 11
  12. 12. Experience Narratives• “The surgery part was pretty much what I had expected. I was in some pain when I woke up from the surgery, but the pain medications made it tolerable.” • Information about discomfort after surgery• “I went to radiation therapy 5 days a week for 6 weeks. This caused me to miss a number of important events with my family.” • Information about the time and energy associated with the treatment 12
  13. 13. Narrative Content 13
  14. 14. Process Narratives• “After I spoke with my doctor, I also talked to other breast cancer survivors and looked for information about the two surgeries on the web” • Strategies for information acquisition• “I knew I needed to consider my appearance and how that would make me feel and how worried I would be about the cancer coming back” • Identification of important decision dimensions 14
  15. 15. Narrative Content 15
  16. 16. Evaluative Valence• Overall tone of the message • Positive • Negative • Mixed• Continuum ranging from extremely positive to extremely negative• Negative narratives will have a stronger effect 16
  17. 17. Relationships Between Dimensions 17
  18. 18. What now?• Research is needed to test the validity of the taxonomy• The taxonomy will necessarily evolve• Patient narratives are NOT homogeneous 18
  19. 19. Conclusions so far...• “Stories” can be harmful or helpful• Depends upon: • their content • their emotional valence • your purpose• Patient narratives are a powerful tool that can and should be used to accomplish a variety of health communication goals• However, they should be used intentionally and carefully 19
  20. 20. Acknowledgements• Collaborators: • Brian J. Zikmund-Fisher, University of Michigan • Sara Tomek, University of Alabama• Work funded by the Informed Medical Decisions Foundation • Grant 0772-1• Email: shafferv@health.missouri.edu 20

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