PARTNER ADvance - Starzl Network

PARTNER AD³vance

PCORI Funded Project

PARTNER AD³vance (PAtient-centered Research in pediatric TransplaNt – Engaging families and Recipients – ADolescent and young ADult ADvisors)

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, Transplant Families, ACTION, and IROC recently received a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award.

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).

Objective

To prepare transplant youth partners and our 4 partner organizations to engage as patient-centered outcomes research partners.

Activities

Establish the Transplant Youth Partners (TYP). We will engage an initial group of AYA transplant recipients as TYP Leads (n=10) who will then help engage and train a 2^nd TYP cohort (n=20). TYPs will

collaborate with Project Leads and our networks on a sustainability plan for the program.

Co-create training and priorities for the TYPs with AYA transplant recipients.

We will integrate and adapt training curricula from 2 previous PCORI Engagement Awards:

(1) PARTNER, our transplant-focused training in PCOR/CER research fundamentals, and (2) TRUE, training on advocacy, leadership, and communication skills for AYA engaged in PCOR/CER. TYP feedback will iteratively inform revision of all training and TYP processes. TYPs will develop AYA-focused PCOR/CER priorities and preferred practices for engagement.

Create infrastructure for sustainable AYA partnership in pediatric transplant PCOR.
Critical to successful, sustained AYA engagement is the capacity of our networks to successfully interact and partner with TYPs. TYPs and Project Leads will meet regularly with partner network stakeholders to refine and disseminate processes for recruiting new TYPs and partnering with TYPs in PCOR, CER and other projects.

Ways to Get Involved