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 2nd 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

PARTNER AD3vance: Transplant Youth Partner (TYP) Participation

Opportunity

- TYP Leads: Recruiting now!

- Transplant as child, now 21-28 years old

   - 8 training sessions to develop research and advocacy skills in year 1 

- Mentor/train new TYPs in year 2

- TYP members: Spring 2025

  - Transplant as child, now 16-28 years old 

- Training to develop research, and advocacy skills

  

- Partner with our networks on TYP priority projects

Benefits

Learning: Learn about patient-centered outcomes research, and gain communication and advocacy skills

Community: Meet and collaborate with other young adult transplant recipients

Leadership: Develop TYP priorities for research and lead presentations to our partner transplant networks

Impact: Develop 1st national group focused on AYA priorities and partner with our networks on projects to meet AYA needs after transplant

Appreciation: $60/hour for all TYP activities, plus travel to 1 in-person project meeting

Apply by April 22

If you are interested, or if you might be interested and have more questions,

please contact our team, PARTNER@starzlnetwork.org

Learn More

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

For more information on our first PCORI award, PARTNER, please visit, partner.starzlnetwork.org

Access PARTNER Modules 1-5 on Jotform