The CF Reproductive and Sexual Health Collaborative (CFReSHC) will introduce and support patient-centered outcomes research (PCOR) to the greater CF community using existing PCOR training products and adapt them so that they address key issues related to researcher-patient teams that solely engage online. We will create a best-practices user guide for online engagement by performing key-informant interviews with patient- or community-engaged teams and periodic assessments of day-to-day platform use with CFReSHC members and other PCOR teams.
This project has four aims:
1. build capacity for PCOR knowledge and skills applicable for longitudinal online engagement,
2. create and disseminate a best practices PCOR user guide for populations that solely engage online,
3. to create an interactive web-based version of our User Guide through a survey and three modified Delphi rounds, and
4. to create a comprehensive training manual for conducting PCOR online (step-by-step instructions), which will incorporate the aforementioned user guide.
