A Learning Health System to increase organ donation and promote community engagement - 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.
