Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community.

ABSTRACT:

Background

Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants' perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction.

Methods

Guided by a prior CF community educational needs assessment, our researcher and pati

SUBMITTER: Godfrey EM 

PROVIDER: S-EPMC8645106 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature