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All Stories Are Not Alike:
 A Taxonomy of Patient
        Narratives

       Victoria A. Shaffer, PhD
       University of Missouri




                                  1
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
Are patient stories
harmful or helpful?


                      3
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
Taxonomy Overview

1. The purpose of the narrative
2. The content of the narrative
3. The evaluative valence of the narrative




                                             5
Narrative Purpose
1. Provide information
2. Make healthcare materials more engaging
3. Model targeted behaviors
4. Persuade people to engage in healthy
   behaviors or cease unhealthy behaviors
5. Provide comfort to patients and families


                                              6
Narrative Purpose




                    7
Narrative Content

1. Outcome narratives
2. Experience narratives
3. Process narratives




                           8
Narrative Content




                    9
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
Narrative Content




                    11
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
Narrative Content




                    13
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
Narrative Content




                    15
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
Relationships Between
      Dimensions




                        17
What now?

• Research is needed to test the validity of
  the taxonomy
• The taxonomy will necessarily evolve
• Patient narratives are NOT
  homogeneous



                                               18
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
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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All Stories are Not Alike: A Taxonomy of Patient Narratives

  • 1. All Stories Are Not Alike: A Taxonomy of Patient Narratives Victoria A. Shaffer, PhD University of Missouri 1
  • 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
  • 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. Taxonomy Overview 1. The purpose of the narrative 2. The content of the narrative 3. The evaluative valence of the narrative 5
  • 6. Narrative Purpose 1. Provide information 2. Make healthcare materials more engaging 3. Model targeted behaviors 4. Persuade people to engage in healthy behaviors or cease unhealthy behaviors 5. Provide comfort to patients and families 6
  • 8. Narrative Content 1. Outcome narratives 2. Experience narratives 3. Process narratives 8
  • 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
  • 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
  • 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
  • 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. Relationships Between Dimensions 17
  • 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. 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. 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