Large Scale Community Based POP Research

•

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Association for Pelvic Organ Prolapse Support (APOPS)

AUGS 2016 Prolapse Consensus Conference: Large Scale Community Based Research for Standardized POP Outcome Measures. Patient engagement in research is pivotal. What can we do to get them to participate?

Health & Medicine

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

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