Overview
Project IMPACT was launched by PFIC Network in 2023 to build capacity for patient-centered comparative clinical effectiveness research (CER) in PFIC.
IMPACT is an acronym that stands for: “Identifying research targets by Merging Patient And Clinician Treatment information.”
The project was funded by a Eugene Washington Engagement Award (EASO-30455) from the Patient-Centered Outcomes Research Institute (PCORI).
What We Did
For two years, PFIC patients and caregivers worked alongside clinicians and researchers to:
- design tools to support planning for future patient-centered CER
- identify CER targets, and
- define what it means to collaborate in research projects.
These efforts produced two lasting resources for the PFIC community:
The Treatment Experience App (TEA)
The TEA is an interactive web platform designed by PFIC patients, families clinicians, and researchers in IMPACT to:
- Provide information about PFIC treatments and patients’ experiences with them
- Learn which treatment outcomes matter most so that we can start to design research studies that are directly relevant to the PFIC community
The TEA is a living resource, updated with summaries of patient responses to the in-app survey.
The IMPACT Roadmap Website
This website is a planning tool and resource library reflecting the shared insights and contributions of PFIC patients, parents, clinicians, and researchers in IMPACT. Its purpose is to foster sustainable multi-stakeholder collaboration and guide the development of future patient-centered CER projects in PFIC.
The Roadmap website also provides additional details about Project IMPACT – including the project’s motivation, structure, and methodology – as well as PFIC Network’s next steps beyond the project.
Why It Matters
Patient-centered comparative clinical effectiveness research (CER) compares the outcomes, including possible benefits and harms, of two or more available healthcare options, to determine what works best for which patients, under what circumstances.
Patient-centered CER requires the engagement of patients and other stakeholders as active partners in research. Their input shapes which healthcare options are compared, which outcomes are measured, and how results are shared.1
PFIC Network launched Project IMPACT to enable the first patient-centered CER study in PFIC and generate real-world evidence that supports families through complex treatment decisions and improves quality of life for those affected by PFIC.
1Reference: https://www.pcori.org/research-related-projects/about-our-research/research-we-fund
Thank you to everyone involved—for your time, your trust, and your partnership in shaping the future of research in PFIC.
Project Leadership
Project Lead: Melissa Kochanowsky, Associate Program Director, PFIC Network
Project Co-Lead: Dr. Gitta Lubke, Science Advisor, PFIC Network
Focus Group Facilitator: Alexandra Perez, Community Advisory Council Chair, PFIC Network
Focus Group Facilitator: Dr. James Squires, UPMC Children’s Hospital of Pittsburgh
Community Liaison: Emily Ventura, Executive Director, PFIC Network
PCOR Consultant: Dr. Emily Perito, UCSF Benioff Children’s Hospital
Web Platform (TEA) Developer: Paolo Catalla, Semi:Formal
Roadmap Website UX Design: Scene Studios LLC
