About the Initiative
In Missouri, nearly 14,000 people are living with kidney failure, but only 1,775 people are on the kidney transplant waitlist1. Though transplant is the best treatment option for kidney failure, persistent challenges for patients, providers, and the stakeholder ecosystem negatively affect access to kidney transplant and donation, and ultimately health outcomes for people with kidney failure2,3. There is an urgent need to transform the environment of kidney transplantation and donation to ensure all patients in Missouri who need a transplant can get one.
Using the Collective Impact Model as a framework, the National Kidney Foundation and a broad set of partners are pursuing a statewide systems change approach to address critical barriers across the transplant and donation community.4 Built on incredible strides made upstream in CKD diagnosis and management through CKDintercept, NKF is committed to driving a cultural shift within transplant to increase equity and access for those who will unfortunately progress to end stage kidney disease.5 This initiative, Changing Lives through Transplant (CLTx), emphasizes collaboration and multi-dimensional solutions in its statewide roadmap and implementation – by the community, for the community.
Collective Impact Process
NKF is employing a multi-phase stakeholder engagement process to create the conditions for Collective Impact and meaningful change. The process has included the development of a data strategy for shared measurement, cross-sector collaboration, and 16 hours of facilitated discussion across four working groups to create a statewide roadmap for change.
Learning and Action Workgroups
The Recipient Journey
Goal: Address key challenges in the kidney transplant process, from referral to post transplant care, with a focus on health equity and improving patient outcomes.
Policy and Payment
Goal: To address policy and payment challenges hindering access to kidney transplantation, with a focus on state and institutional-level barriers.
Healthcare System Engagement
Goal: Improve coordination and communication between healthcare institutions involved in the transplant process, addressing resource challenges and social determinants of health.
Living Donor Engagement and Care
Goal: To enhance living donor education, support, and long-term care, while addressing challenges that may discourage potential donors from diverse backgrounds.
Missouri Roadmap and Implementation
Explore the Statewide Recommendations:
Employ a systems change approach to increase transplantation and donation
Employ a systems change approach to increase transplantation and donation
Execute quality improvement projects from CKD diagnosis and management through evaluation, including embedded education and referral processes
Identify and build new organ donor registration opportunities outside the DMV
Convene a workgroup to define, design, and implement a shared transplant patient referral form, including basic critical information and SDOH assessment
Improve preemptive transplant rates across Missouri and increase access to preemptive transplant
Improve preemptive transplant rates across Missouri and increase access to preemptive transplant
Identify, develop, and pilot educational models for CKD 3b-4 patients with a focus on preemptive transplant and living donation
Research perceived barriers among MO general nephrologists to referring CKD patients for preemptive transplant and build solutions to address key challenges
Increase statewide collaboration on practices and tools to improve transplant and donation system capacity
Increase statewide collaboration on practices and tools to improve transplant and donation system capacity
Create and institute a statewide shared learning network to foster peer-to-peer learning of best practices
Pilot and evaluate the impact of a business case toolkit for transplant program growth to increase living donation
Improve navigation and support to reduce barriers for CKD patients and potential living donors
Improve navigation and support to reduce barriers for CKD patients and potential living donors
Launch a pilot using Community Health Workers to provide navigation services in a transplant setting, including addressing community and social support needs
Engage the MO employer community to identify state policy strategy around removing barriers for living donors
In addition to state-level recommendations, one national recommendation:
Advocate for expanding eligibility for NLDAC to provide more extensive support
Ways to Get Involved
The NKF is committed to advancing transplant initiatives focused on equity, access and prioritizing the well-being of kidney patients. Achieving sustainable system change requires careful planning, collaboration, and time—and we need your support!
Commit to the statewide roadmap and recommendations.
For more information about this initiative, please contact:
- Haley Jensen, Sr. Director Transplant Programs
- Alexandra Garrick, Collective Impact Director
References
- State Data. Organ Procurement and Transplantation Network. Accessed August 15th, 2024.
- Poggio ED, Augustine JJ, Arrigain S, Brennan DC, Schold JD. Long-term kidney transplant graft survival-Making progress when most needed. Am J Transplant. Aug 2021;21(8):2824-2832. doi:10.1111/ajt.16463
- Snyder JJ, Schaffhausen CR, Hart A, et al. Stakeholders' perspectives on transplant metrics: the 2022 Scientific Registry of
Transplant Recipients' consensus conference. Am J Transplant. Jul 2023;23(7):875-890. doi:10.1016/j.ajt.2023.03.012 - Hanley Brown, F. Kania, J. and Kramer, M. Channeling Change: Making Collective Impact Work. Stanford Social Innovation Review. 2012.https://doi.org/10.48558/2T4M-ZR69
- Laue K, Schultz M, Talbot-Montgomery E, et al. Show Me CKDintercept Initiative: A Collective Impact Approach to Improve Population Health in Missouri. Mayo Clin Proc Innov Qual Outcomes 2024;8(1):82-96. (In eng). DOI: 10.1016/j.mayocpiqo.2023.12.004.