Our projects aim to promote the principles of patient centered outcomes research within the Cystic Fibrosis community and in other chronic disease populations.
PCORI EWA (20181-UIC)
PCOR techniques to engage patients are usually designed for in-person, group interactions. CFReSHC has solely engaged virtually since its inception in 2016 due to patients’ risk of cross-infection. COVID-19 presented a critical opportunity to evaluate if and how CFReSHC’s existing virtual patient engagement model could be adapted and improved for other patient groups who now meet virtually due to the pandemic. We will share CFReSHC’s virtual model for patient-driven research generation with the breast cancer (BC) community to examine its utility and adapt its tools to benefit women with BC’s SRH. Since SRH is multi-layered, we will create a Patient-Driven PCOR Lab for establishing Transdisciplinary Team Research (LeTTR) in which stakeholders will convert patient-driven research questions into viable PCOR studies.
Our project consists of four aims:
- Test the feasibility of using CFReSHC’s virtual patient engagement model; make adaptations to optimize BC community engagement.
- Empower women with CF/BC to generate research questions on SRH topics.
- Establish a lab to translate patient-generated research questions into BC/CF studies designed and executed by transdisciplinary PCOR research teams.
- Ensure that research aligns with PCOR principles and patients’ experiences and priorities.
As part of these aims, our stakeholders are adult women with BC and CF, researchers from multiple disciplines who work on BC-SRH and CF-SRH issues, and clinicians. CFReSHC will collaborate with the Patient Advocate Foundation (PAF), a non-disease specific organization helping about 3600 BC patients through its case management program yearly. PAF has a strong connection to, and understanding of, our target patient-partners and it will bring a diverse cohort of BC patients/survivors who have been served by PAF’s direct patient services. LeTTR will ensure help CFReSHC continue its mission by promoting future CFReSHC CF-SRH research projects.
PCORI Eugene Washington Award (10569-UWash)
Our Guide for Online PCOR Engagement is now published. Click here to see the Guide.
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.