The Starzl Network for Excellence in Pediatric Transplantation in collaboration with UPMC Children’s Hospital of Pittsburgh, UCSF Benioff Children’s Hospital, Starzl Network Patient & Family Voice, and Transplant Families recently received a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award. The two-year award will support our project, PAtient-centered Research in pediatric TransplaNt-Engaging families+Recipients (PARTNER).
PARTNER represents a novel effort in the field of transplantation: it is co-led by parents of transplant recipients and healthcare providers. In PARTNER, we seek to build on the established bonds between providers and patient partners, using the infrastructure and partnerships of the Starzl Network and Transplant Families to expand from personal relationships into organizational partnerships with shared priorities, knowledge, and a sustainable capacity to do collaborative patient-centered outcomes research (PCOR).
To achieve this, we will use a cyclical design to progressively develop PCOR skills, while continuously eliciting input from the transplant community. Each of our 6 cycles includes an education module about PCOR for families and providers followed by opportunities for both groups to share their feedback through surveys, focus groups, and an Advisory Board.
We are excited to partner with RealTime Clinic to provide electronic app-based surveys to our parent and healthcare partners. Nehal Swami, CEO of RealTime Clinic, had this to say about the project, “At RealTime Clinic, our moonshot is to eliminate preventable organ transplant rejection. We also firmly believe that better engagement between the care team and the family will improve adherence to the medical regimen."
The PARTNER project will officially kick off on February 1, 2021. We are honored to have received a PCORI Eugene Washington Engagement Award and look forward to integrating patient families and healthcare providers to improve outcomes for pediatric transplantation patients.
For more details, please visit the PARTNER Project page.
The Starzl Network’s mission is 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. For more information, please visit: starzlnetwork.org
