Roadmap Part 1 — Engagement Guidance
Barriers & Solutions to Patient-Researcher Partnerships
- A core principle of patient-centered CER is the meaningful and active involvement of patients as equal partners at every stage of research, from study design to the dissemination of findings.
- This approach ensures that research methods and the resulting evidence directly reflect patient priorities, needs, and lived experiences.
- Through discussions on patient engagement in research, IMPACT participants contributed insights that can be used by future PFIC patients, caregivers, clinicians, and researchers when forming patient-centered CER project teams.
List of Barriers & Solutions
IMPACT participants identified barriers and proposed solutions for partnering in future patient-centered CER projects. The resulting figure below can be used as a guide when organizing PFIC patient-centered CER project teams.
For a practical checklist to address these barriers in study planning, download the Researcher Companion (see p.17).
Time Constraints
Problem
Partners in patient-centered CER projects must navigate busy schedules between work, school, and hospital visits.
Solution
Schedule project activities in alignment with availability; send materials in advance; keep activities short, efficient, and output-driven.
Logistics
Problem
Partners in patient-centered CER projects may navigate logistic challenges in order to participate (e.g., childcare, travel to meetings or site visits).
Solution
Obtain sufficient project funding to provide compensation to partners and accommodate logistical support needs.
Knowledge
Problem
Partners may have a lack of knowledge and/or experience with patient-centered CER and the research process.
Solution
Provide comprehensive patient-centered CER education in lay language; provide opportunities for live Q&A.
Confidence about contributions, value of patient-centered CER
Problem
Historical mistrust of healthcare institutions, language, and systemic economic barriers impact diverse partner engagement.
Solution
Engage targeted efforts to reach more of the PFIC community through inclusive patient-centered CER awareness and education campaigns.
Pediatric Inclusion
Problem
Many PFIC patients are children, posing unique communication and scheduling challenges – but it is important to include their voices in patient-centered CER design.
Solution
Provide child assent and parental consent forms; schedule activities around school hours; create engagement opportunities and material for children’s education level. 
Engagement Guidance