We are thrilled to announce our Guide for Online PCOR Engagement is now published!
What is PCOR? PCOR stands for Patient-Centered Outcomes Research. According to PCORI (Patient Centered Outcomes Research Institute), PCOR studies questions and outcomes that are meaningful and important to patients and caregivers by engaging all parties as equal members of the research time.
PCORI Eugene Washington Award (10569-UWash)
In May 2017, CFReSHC received a grant from PCORI to build capacity for PCOR in the cystic fibrosis (CF) community. The CF community has a long history of engagement in research, starting with the founding of the CF Foundation. With the approval of highly effective modulator therapy, CF is changing from a fatal childhood disease to a chronic condition in which adults with CF are the experts in their bodies. Additionally, the CF community is a leader in online engagement since patients cannot be in the same room due to cross-infection concerns. Our project consisted of two aims:
- Build capacity for PCOR knowledge and skills applicable for longitudinal online engagement in the CF community
- Create and disseminate a best practices PCOR user guide for populations that engage mostly or solely online following the CF community’s example.
As part of these aims, we created both a webinar PCOR training program for the CF community adapted from existing training materials and a user guide to assist PCOR teams with selecting online collaboration platforms to use for online engagement.
PCORI Eugene Washington COVID-19 Extension
In September 2020, we received a 1-year extension of our previous award (10569-UWash). This extension enables us to further develop our user guide for online engagement into an interactive, web-based tool and to develop an online training manual to serve as a companion to our training program series. In order to accomplish these aims, we will engage a subset of individuals with diverse backgrounds from the CF and PCOR communities to help develop and fine-tune these products.