Sherrie Palm
Association for Pelvic Organ Prolapse Support
Disclosures:
I have the following relevant financial relationship(s) in the products
or services described, reviewed, evaluated or compared in this
presentation.
Financial: Book royalties
Pelvic Organ Prolapse: The Silent Epidemic
Nonfinancial —Founder/Executive Director: Association for Pelvic
Organ Prolapse Support. Receives no compensation as Executive
Director
Patient feedback in research is pivotal-
but how do we get them to engage?
TALK OUT LOUD ABOUT POP COMFORTABLY
 POP is a health condition, nothing more, nothing less-when POP
arena does not speak comfortably out loud about the condition,
message to patients is they should be embarrassed
 Awareness & stigma reduction won’t occur until everyone in POP
arena participates equally and effectively
YOU GET WHAT YOU GIVE
 Clarify study needs/objectives in plain English, role
patient plays
 Clarify how much time study will take, patients have
more significant priorities than research
 Indicate the value of patient voice, they often feel their
needs are dismissed as insignificant
 Inform participants of results
Offer an
incentive
$$
Electronic
device
lottery
Prior + post
reward for
completion
Gift card
Make it worth their while
 Enable patient feedback to format questions
Will they capture most
accurate insights?
The reality of POP
Key Consideration
 Short surveys
 Travel not user-friendly, phone/written surveys
better
Give patients the respect
you expect to receive

Large Scale Community Based POP Research

  • 1.
    Sherrie Palm Association forPelvic Organ Prolapse Support
  • 2.
    Disclosures: I have thefollowing relevant financial relationship(s) in the products or services described, reviewed, evaluated or compared in this presentation. Financial: Book royalties Pelvic Organ Prolapse: The Silent Epidemic Nonfinancial —Founder/Executive Director: Association for Pelvic Organ Prolapse Support. Receives no compensation as Executive Director
  • 3.
    Patient feedback inresearch is pivotal- but how do we get them to engage?
  • 4.
    TALK OUT LOUDABOUT POP COMFORTABLY  POP is a health condition, nothing more, nothing less-when POP arena does not speak comfortably out loud about the condition, message to patients is they should be embarrassed  Awareness & stigma reduction won’t occur until everyone in POP arena participates equally and effectively
  • 5.
    YOU GET WHATYOU GIVE  Clarify study needs/objectives in plain English, role patient plays  Clarify how much time study will take, patients have more significant priorities than research  Indicate the value of patient voice, they often feel their needs are dismissed as insignificant  Inform participants of results
  • 6.
    Offer an incentive $$ Electronic device lottery Prior +post reward for completion Gift card Make it worth their while
  • 7.
     Enable patientfeedback to format questions
  • 8.
    Will they capturemost accurate insights? The reality of POP Key Consideration
  • 9.
     Short surveys Travel not user-friendly, phone/written surveys better
  • 10.
    Give patients therespect you expect to receive