Partner AD3vance

PAtient-centered Research in pediatric TransplaNt – Engaging families and Recipient

Background

While traditional research has improved outcomes for pediatric transplant recipients, patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) has been lacking. Such PCOR/CER must engage these recipients themselves as patient partners, to ensure it addresses their priorities and respects their preferences.

 

Proposed Solution to the Problem:

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).

 

Objective:

To prepare TYPs and our 4 partner organizations to engage as PCOR 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.
Cheerful pediatrician

Projected Outcomes and Outputs

During the Award, we will establish the TYP program, refine training, facilitate TYP creation of PCOR priorities and preferred practices for engagement, and develop TYP sustainability and support plans. This will establish a sustainable TYP group that can consult on, co-create, and embed in PCOR and CER projects with our networks. We anticipate the TYP program will foster AYA engagement and empowerment in pediatric transplant PCOR and CER – improving outcomes and quality of life for pediatric transplant recipients from infancy through adulthood.

Outcomes

Short-Term Outcomes

  • Recruit and train TYP participants in PCOR/CER
  • Develop a subsequent TYP-focused training program for PCOR research fundamental development and communication/advocacy skill acquisition
  • Identify TYP-driven PCOR/CER priorities and preferred practices for engagement
  • Build sustainable partnerships for TYP involvement within each participating organization

Medium-Term Outcomes

0-2 years post-project period

  • Identify a sustainable TYP group with members that:
    • Consult on PCOR and other projects in the PARTNER AD3vance networks o Lead continuous improvement in TYP
    • Serve as peer educators and TYP representatives in network and community meeting
  • Develop TYP training that can be utilized by PARTNER AD3vance networks and adapted and implemented by other organizations focused on pediatric-onset chronic disease
  • Design TYP-focused and led dissemination of PCOR/CER priorities and preferred practices
  • Embed TYO participation into leadership roles within Networks for PCOR/CER implementation

Long-Term Outcomes

3+ years post-project period

  • Cultivate a culture of TYP engagement in pediatric transplant PCOR and in the PARTNER AD3vance networks
  • Prioritize TYP-driven priorities in PCOR
  • Refine and improve TYP training that can be utilized by PARTNER AD3vance networks and adapted and implemented by other organizations focused on pediatric-onset chronic disease
  • Conduct PCOR that addressed TYP-driven priorities

Patient and Stakeholder Engagement Plan

We will train 2 AYA cohorts to serve as TYPs. Training and processes will be refined based on multistakeholder evaluations. TYPs and stakeholders in our 4 networks, which include parents, providers and researchers, will engage regularly with TYPs throughout the project to learn about TYP progress, capacity, and priorities and to develop plans for sustainable partnership with TYPs.

 

Project Collaborators

Experts in AYA engagement will advise on this work, particularly on (1) optimizing diverse and equitable AYA engagement (TRUE Youth Research Advisory Council, from YMCA San Francisco and UCSF) and (2) sustainable, effective virtual engagement (AYA patient advocates from Generation Patient).

PARTNER AD3vance

For more information please visit starzlnetwork.org/partner

Visit the Website