A Learning Health System to increase organ donation and equity in populations experiencing health disparities

Hennepin Healthcare Research Institute awarded NIH grant, in partnership with LifeSource, to study a Learning Health System model that could improve community trust and reduce persistent disparities in donation and transplantation  

MINNEAPOLIS – Native Americans and other underserved communities suffering from organ failure are less likely to receive a life-saving organ transplant due to persistent disparities along the entire transplant process. Despite numerous research interventions, rates of waiting list additions and transplant for these populations have not increased in the United States in the past two decades. The National Institutes of Health (NIH) has awarded the Hennepin Healthcare Research Institute (HHRI) a grant to study using a Learning Health System (LHS) model to increase organ donation and reduce disparities in access to transplantation. 

The LHS for organ donation will use the “Talk Donation” program that was developed and piloted in urban Minneapolis by LifeSource, an Organ Procurement Organization (OPO) serving Minnesota, North Dakota and South Dakota. The “Talk Donation” campaign was created to increase Native American organ donation rates. The grant will help scale up “Talk Donation” for new communities in the region LifeSource serves.  

OPOs face a barrier to continuously improve and scale interventions because the national transplant system does not provide a feedback loop to identify what interventions are effective in individual communities. To address this barrier, HHRI will develop and evaluate organ donation equity-focused data tools that are adaptable for other interventions to monitor and guide community-level engagement across the United States. 

“The goal to create a Learning Health System means to create a system that embeds research into everyday practice. In organ donation, we can use existing data in new ways to support and scale up the work that LifeSource is doing,” said Cory Schaffhausen, PhD, Principal Investigator on the study. “LifeSource is a key partner to understand the needs of an Organ Procurement Organization, and we hope the tools developed during the project can also help monitor and improve equity in other OPOs across the US.” 

“At the core of the LifeSource mission is the very best of humanity – to give one another the gift of life. Within that is a call to equity: to ensure that all lives, regardless of background, race or culture can – without barriers – access and give the gift of life through organ, tissue, and eye donation,” said LifeSource Chief Executive Officer, Kelly White. “We are excited take another step towards that vision of equity by expanding our successful “Talk Donation” program and sharing data and tools with others.”  

The LHS for organ donation aims to: 

• Expand “Talk Donation” implementation through engagement with Tribal Communities in Minnesota, South Dakota and North Dakota to increase support for organ donation. 
• Assess the use of an LHS model following implementation of the “Talk Donation” campaign and monitoring with the equity data tools. 
• Develop a systematic outcomes feedback loop to inform interventions across other populations experiencing health disparities and other solid organ transplant fields as well as tissue donation. Additionally, the research will increase awareness and transparency of the organ donation system. 

“This grant will help bring together a collaborative team that has deep connections within the local community, experience sharing organ donation information that is culturally competent, and researchers and statisticians who can track progress meeting the NIH’s goal to improve equity in organ donation and transplant,” Schaffhausen added. 

This research is supported by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health under Award Number R01DK137159. 

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About the Hennepin Healthcare Research Institute 

Hennepin Healthcare Research Institute (HHRI) is the research arm and a nonprofit subsidiary of Hennepin Healthcare System, Inc., a comprehensive health system in Minneapolis. HHRI is one of the largest nonprofit medical research organizations in Minnesota and consistently ranks in the top 10 percent of all institutions receiving research funding from the National Institutes of Health.  

About LifeSource 

LifeSource is the non-profit organization dedicated to saving lives through organ, eye and tissue donation in the Upper Midwest, serving more than seven million people in communities across Minnesota, North Dakota and South Dakota. LifeSource promotes donation in our communities through the Donate Life brand. We are relentlessly pursuing a day when no one dies waiting for a life-saving transplant. Learn more at Life-source.org. 

Media Contacts: 

Susan O’Reilly, Hennepin Healthcare Research Institute, 612-849-3129, soreilly@hhrinstitute.org 

Sarah Sonn, LifeSource, 612-800-6275, ssonn@life-source.org