Project Summary/Abstract
Organ transplantation is the best therapeutic option to improve quality of life and mortality for many patients
suffering from organ failure. Unfortunately, over 10,000 die or become too sick each year while on the waitlist
due to an extreme organ shortage. Native Americans (NA) and other minorities are less likely to receive an
organ transplant and are also less likely to become an organ donor. Increasing organ donation is a critical
strategy to reduce disparities in access to transplant. Despite numerous research interventions to increase
organ donation, rates of waitlisting and transplant have not increased in the United States in the past two
decades. Organ Procurement Organizations (OPOs) are a primary driver of the deceased donation process
and provide local service areas with education and family support. OPOs are a critical resource to disseminate
interventions across the US through local community relationships. The TalkDonation campaign to increase
NA organ donation was developed and piloted in urban Minneapolis by LifeSource, an OPO serving Minnesota
and surrounding states. However, 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. A Learning Health System (LHS) model with a focus on embedded
research, systems thinking, and integration of outcomes data into practice can provide a sustainable national
system for monitoring organ donation outcomes using publicly available data. The LHS for organ donation will
use the TalkDonation program to develop and evaluate organ donation equity-focused data tools that are
adaptable across geographies and interventions to monitor and guide community-level interventions across the
US. The proposed organ donation data tools will describe organ donation at county, race, and ethnicity levels
to monitor disparities in organ donation (Aim 1). We will expand TalkDonation implementation through multi-
phased engagement with Tribal Communities in Minnesota, South Dakota, and North Dakota to increase
support for organ donation. We will conduct participatory workshops to understand community perspectives
and tailor materials for unique needs in Northern Great Plains Native American communities. (Aim 2). We will
use surveys and in-depth interviews to assess the use of a Learning Health System model following the
implementation of the TalkDonation campaign and monitoring with the equity data tools. We will use the RE-
AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) implementation framework and
identify implementation outcomes to facilitate scaling and sustainability (Aim 3). This research will allow us to
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. In addition, the proposed
research will increase awareness and transparency of the organ donation system, potentially improving
community trust in the transplant system and reducing persistent disparities.
