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?

1. Sherrie Palm
Association for Pelvic Organ Prolapse Support

2. 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

3. Patient feedback in research is pivotal-
but how do we get them to engage?

4. 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

5. 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

6. Offer an
incentive
$$
Electronic
device
lottery
Prior + post
reward for
completion
Gift card
Make it worth their while

7.  Enable patient feedback to format questions

8. Will they capture most
accurate insights?
The reality of POP
Key Consideration

9.  Short surveys
 Travel not user-friendly, phone/written surveys
better

10. Give patients the respect
you expect to receive