Chapter Two
Guiding Principles
Apply Starzl Network Principles to Patient-Centered Research
Sharing Information
- How will participating families – and the transplant community – learn about:
- Exactly what participating in the study will be like – what will happen during the study?
- What the project results are, and what they mean?
- How will the project team make sure that communication about the study is clear, easy to understand, and from sources that families trust?
- How will the confidentiality and personal information of participating children and families be protected in this project?
Improving the Transplant Journey
- How will this project help the lives and health of children and families who are participating in it?
- How will the results of this project help future children with liver transplants and their families?
- How does this project minimize the burden of participating on children and families? (including the burdens of pain, time, costs, and stress)
- Is participating in the project “user-friendly” for patients and families?
Inclusive Partnership
- Is participating in the project “user-friendly” for patients and families?
- How will the results of this project help future children with liver transplants and their families?
- How does this project minimize the burden of participating on children and families? (including the burdens of pain, time, costs, and stress)
- Is participating in the project “user-friendly” for patients and families?
