Patient-centered outcomes research in the Starzl Network
PARTNER
Roadmap
PAtient-centered Research in TransplaNt-Engaging families and Recipients (PARTNER)
What is the goal of the PARTNER Roadmap?
- To guide the design and conduct of patient-centered outcomes research in the Starzl Network
- To provide strategies and tools to ensure that patient-centered outcomes research in the Starzl Network adheres to our guiding principles for this work:
- Improving the transplant journey
- Inclusive partnership between stakeholders, particularly patient partners and healthcare providers
- Sharing information
1: Project Team
Assembling a PCOR project team:
- Ensure key stakeholders participation in project leadership and design
- Clearly define each stakeholders contributions to the project
“We, as parents, know our child’s medical history best and know what has worked and has not worked for our child.”
– Parent of a pediatric transplant patient
2: Guiding Principles
Utilize Starzl Network guiding principles for patient-centered outcomes research
3: Recognize Roadblocks
Identify potential barriers to successful, collaborative PCOR and strategies to acknowledge and overcome those barriers.
“How can we empower everyone to speak up and share their perspective? ”
4: Design the Project
- Focus on a patient-centered research question
- Effectively communicate with stakeholders to engage and empower all team members, at all project stages
- Provide patient- and family-centered recruitment and consent plans
- Clearly define what will happen to patients in the study
- Design intervention and monitoring strategies that are patient/family-centered
- Certify that outcomes will be meaningful to patients, families, and other stakeholder
- Provide a dissemination plan that shares lessons from the study with participants and other stakeholders
5: Sharing Information
Methods and PARTNER participants – Who did we engage and how?
What are the goals of the PARTNER Roadmap?
Guide Members
Help all members of our Starzl Network community learn about patient-centered outcomes research
Provide Strategies
To provide strategies and tools to ensure that patient-centered outcomes research in the Starzl Network adheres to our guiding principles.
Collect Feedback
Get feedback from all stakeholders about how the Starzl Network and Transplant Families should do patient-centered outcomes research
Want more information?
Please contact us using the form or visit our community page.