IMPACT Roadmap

towards Patient-Centered Comparative Clinical Effectiveness Research in PFIC

Identifying research targets by Merging Patient And Clinician Treatment information

What Is the IMPACT Roadmap?

  • The IMPACT Roadmap was developed through PFIC Network’s PCORI-funded project, IMPACT.
  • It is a planning tool and resource library reflecting the shared insights and contributions of PFIC patients, parents, clinicians, and researchers.
  • Its purpose is to foster sustainable multi-stakeholder collaboration and guide the development of future patient-centered CER projects in PFIC
Explore the Roadmap

IMPACT’s Overview

This overview highlights the journey and accomplishments of the IMPACT project, along with our current research focus.

Car
Gap Identified

There is limited research in the most effective, patient-centered care approaches for PFIC.

Educated Community About Patient-Centered Comparative Clinical Effectiveness Research (CER)

PFIC patients, parents, clinicians, and researchers received training through virtual learning modules and focus groups.

Built the Treatment Experience App (TEA)

Participants created an interactive web app that displays information and collects patients’ experiences for all currently available PFIC treatments.

Discussed Patient Partnership in Research

Participants explored how patients can be involved as equal partners in ALL phases of a research study, including planning, carrying out the study, and dissemination of results.

Discussed Patients’ 
Treatment Experiences

Participants recognized pain points, decisional dilemmas, and variability in care throughout the PFIC treatment journey.

Identified Principles for Engaging Patients as Partners

Participants evaluated barriers, solutions, and important considerations for involving patients in future research teams

Identified targets 
for PFIC PC-CER

Participants identified exhaustive lists of meaningful treatment questions and outcomes using the TEA, focus group, and community survey data.

Future goal

First patient-centered CER study in PFIC to address a patient-identified research gap.

What are the goals of the IMPACT roadmap?

Provide tools to support meaningful patient and parent involvement in all stages of research

Inform the design of future research studies that compare PFIC treatments using outcomes that matter to patients and families

Guide long-term efforts to build capacity for the first patient-centered CER study in PFIC.

Roadmap Background

More information about project IMPACT, including 

  • Why it was started 
  • Our objectives, and 
  • How we accomplished them
Background
doctor checkup heart
Roadmap Part 1

Engagement Guidance

Tools and recommendations for supporting meaningful, sustained involvement of patients and parents in PFIC research, including:

  • Barriers & Solutions to Patient-Researcher Partnerships
  • Guidance for Forming Successful Multi Stakeholder Research Teams
  • Communication & Dissemination Strategies
Read More
child doctor checkup
Roadmap Part 2

Future Directions for PFIC PCER

Content to inform the design of CER studies grounded in patient priorities, including:

  • Guiding Principles for PFIC Patient-Centered CER Projects
  • Considerations for Developing CER Questions in PFIC
  • PFIC Patient-Centered CER Priorities
  • Strategies to Reduce the Burden of Study Participation
Read More
Roadmap Part 3

Next Steps & Sustainability

Guidance for continuing this work to build capacity for CER beyond IMPACT, including:

  • Remaining Capacity Needs
  • PFIC Network’s 5-Year Plan
  • Future Resources & Engagement Strategy
Read More

Questions or feedback?

Interested in getting involved?

Please contact us using the form or email info@pfic.org!

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