We need PFIC community members (like you!) to share input and prepare to become active partners in research.
You can receive email announcements for upcoming IMPACT activities by joining the PFIC Network Mailing List!
Upcoming Activities
Join us for our next Focus Group!
Join our community of patients, parents, clinicians, and researchers on August 20th at 6pm EST on Zoom for a conversation about research!
Module 4 is now live!
In Module 4, we are going on a virtual tour of the PFIC IMPACT Treatment Experience App (TEA), soliciting your feedback, and encouraging patient and parent users to complete the TEA survey. Our goal is to reach 100 survey responses in the TEA by mid-August so we can discuss the results together at our next focus group!
Ongoing Activities
Learning Modules
The IMPACT learning modules provide education about patient-centered outcomes research for patients AND clinicians. Each module + survey takes around 25 minutes and can be completed from anywhere at any time from your phone or computer!
IMPACT Module 1 – “What is Patient-Centered Outcomes Research (PCOR)?” Take Module 1 Now!
IMPACT Module 2 – “How can I contribute to patient-centered outcomes research (PCOR)?” Take Module 2 Now!
IMPACT Module 3– “How can we develop research questions that lead to answers that matter to patients and families?” Take Module 3 Now!
PFIC Treatment Experience App (TEA)
IMPACT: TEA is now live!
The PFIC IMPACT Treatment Experience App (IMPACT:TEA) was designed by PFIC families and clinicians to provide information about PFIC treatments and patients’ experiences with them.
It includes a survey to help us gather more info about patients’ experiences so that we can start to design research studies that are directly relevant to the PFIC community!
Who Can Participate
- PFIC patients
- Parents, caregivers, legal guardians, or other family members of PFIC patients
- Individuals involved in PFIC healthcare (MDs, nurse, or nurse practitioners)
- PFIC researchers
Adolescents (14-18 years) diagnosed with PFIC or related diseases are greatly encouraged to participate. Adolescents will be required to provide their assent and parental consent prior to accessing the modules and focus groups.
Ways to Participate
Learning Modules and Feedback Surveys
Over the next two years, we will release (six) online learning modules with accompanying surveys. These modules will provide education about patient-centered outcomes research for patients AND clinicians. Each module + survey will take roughly 25 minutes, and can be completed from anywhere at any time from your phone or computer!
Focus Group Meetings
Starting in August 2023, there will be Focus Group meetings every other month to discuss the module content and module survey results. These meetings will allow us to take a deeper dive into patient-centered outcomes research together!
In the first year of the project, Focus Group participants will also provide input for building the interactive web app.
Interactive Web App (Now Live!)
The PFIC IMPACT Treatment Experience App (IMPACT:TEA) was designed by PFIC families and clinicians to provide information about PFIC treatments and patients’ experiences with them. It includes a survey to help us gather more info about patients’ experiences so that we can start to design research studies that are directly relevant to the PFIC community! You can check out the IMPACT:TEA & contribute to the survey here.
Contact Info
Contact us! Email info@pfic.org to get more information about how you can participate in IMPACT activities.