Project Structure
Goals
Funded by a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), Project IMPACT was launched by PFIC Network in 2023 to build capacity for patient-centered comparative clinical effectiveness research (CER) in PFIC.
For two years, patients and caregivers worked alongside clinicians and researchers to design tools, identify CER targets, and define what it means to collaborate in research projects.
Objectives
Project IMPACT centered on three key objectives:
Establish a shared understanding of patient-centered CER between PFIC patients, parents, clinicians, and researchers. gather community input on how to form and sustain partnerships that bring together patients, families, clinicians, and researchers in research
Develop a web-based Treatment Experience App (TEA) to collect and share patients’ real-world treatment experiences
Co-create a roadmap to guide the design of future PFIC patient-centered CER studies
Engagement Structure
To accomplish our objectives, Project IMPACT was organized around four interconnected engagement pathways.
Each pathway offered opportunities for patients, caregivers, clinicians, and researchers to contribute their expertise—and together, they formed the backbone of this roadmap.
