PARTNER

PARTNER: PAtient-centered Research in pediatric TransplaNt-Engaging families+Recipients

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).

Project Leadership

  • Project Co-Lead: Dr. Emily Perito, UCSF Benioff Children’s Hospital
  • Project Co-Lead: Dr. James Squires, UPMC Children’s Hospital of Pittsburgh
  • Project Co-Lead: Ms. Elizabeth Eisenberg, Starzl Network Patient & Family Voice
  • Project Co-Lead: Ms. Melissa McQueen, Transplant Families

Goals

  • Help all members of our Starzl Network community learn about patient-centered outcomes research
  • Get feedback from all stakeholders about how the Starzl Network and Transplant Families should do patient-centered outcomes research
  • Improve the lives of all pediatric transplant recipients TOGETHER—including those that you know and love!

Ways to Get Involved

Advisory Board

Activities Include:

  1. Pilot and provide initial feedback on education modules and surveys
  2. Review feedback summaries and deliverables
  3. Make recommendations on further revisions of the PCOR roadmap
  4. Assist with agenda-setting, engagement, shared decision-making, and sustainability

More details about being advisory board member can be found here.

Stakeholder Education Modules and Surveys

Goal: Help participants learn about patient-centered outcomes research

6 modules will be available and you can participate anytime, anywhere! Modules will be accessible via mobile/tablet app or website. Each modules will take approximately 30 minutes to complete, including a follow up survey.

Focus Groups

Participant in virtual focus groups for more in-depth discussion. Information will be used to guide further learning module development.

Stakeholder Attendance at Annual Meeting

A commitment to engage leaders across multiple fields and combine their expertise.

For more details on participating in PARTNER, please check out these information sheets:

Advisory Board Member Stakeholder Participation

Want to get involved or have questions? Please contact us!