Community
Who are the key stakeholders in our patient-centered research about pediatric liver transplant?
Patient-centered outcomes research teams should truly represent the pediatric transplant community (eg speaking to equity – important to have diverse representation)
Who are our patient partners and key stakeholders?
- Liver transplant recipients and their families, encompassing parents, caregivers, and family members, functioning as:
- Caregivers for both the transplanted child and the entire family, advocating across health and community settings, interpreting for their children and the transplant team, serving as communication hubs, facilitators, and holders of critical medical history.
- Active learners, investigators, protectors ensuring the safety and comfort of their children, and decision-makers as integral members of the healthcare team.
- Healthcare providers comprising transplant coordinators, nurse practitioners, mental health providers, social workers, nurses, and doctors collaborating closely.
- Other stakeholders including UNOS, schools/teachers, insurance, funding organizations, and pharmaceutical companies, forming a broader network supporting and impacting the transplant journey.
What do our stake holders bring to the table?
- Transplant Recipients, Parent, Caregivers & Family Members
- Desire to help transplant children & families
- Priorities & preferences about child & family’s health and life
- Experience living through and with transplant, 24-7-365
- Deep knowledge about life before, during & after transplant
- Anxiety, fear, trauma – about past & new experiences
- Healthcare Providers & Other Stakeholder
- Desire to help transplant children and families
- Research knowledge and experience
- Relationships with patient partners and other team members
- Experience with the transplant journeys of many families & children
The Starzl Network is a community of top pediatric transplant centers focused on discovery and lifesaving innovation.
Our Mission: To unite big data, technology, patient advocacy, and transplant thought leaders to deliver the best possible care and develop new, scalable solutions to pediatric transplantation’s most challenging problems.
Our Mission: To unite families who have children with solid organ or bone marrow transplants by providing inspiration, support, and education. We aim to help patients and families make the most of life before, during, and after transplant.
Our Next Project:Partner AD3vance
In PARTNER AD3vance, we will establish Transplant Youth Partners (TYP), an educated and empowered group of adolescents and young adults (AYA) transplanted as children, and infrastructure for TYP partnership-building with 4 organizations dedicated to improving the lives of pediatric transplant recipients: 1 parent-led patient advocacy group (Transplant Families) and 3 multi-center learning health systems (Liver: Starzl Network, Heart: ACTION, Kidney: IROC).
