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

项目总结/摘要 器官移植是改善许多患者生活质量和死亡率的最佳治疗选择 患有器官衰竭不幸的是，每年有超过10，000人在等待名单上死亡或生病 因为器官极度短缺美国原住民（NA）和其他少数民族不太可能获得 器官移植，也不太可能成为器官捐赠者。增加器官捐赠是一个关键 减少获得移植机会不平等的战略。尽管有许多研究干预措施， 在过去的两年里，美国的器官捐献率、等待登记率和移植率都没有增加。 几十年器官采购组织（OPO）是死者捐赠过程的主要驱动力 并为当地服务区提供教育和家庭支持。OPO是传播的重要资源 通过当地社区关系在美国各地进行干预。TalkDonation运动旨在增加 NA器官捐赠是由明尼苏达州的OPO LifeSource在明尼阿波利斯市开发和试点的 及周边国家。然而，业务组织面临着不断改进和扩大干预措施的障碍 因为国家移植系统没有提供一个反馈回路来确定什么是干预措施， 在个别社区有效。学习健康系统（LHS）模型，重点是嵌入式 研究、系统思维和将结果数据纳入实践可以提供一个可持续的国家 使用公开数据监测器官捐赠结果的系统。器官捐赠的LHS将 使用TalkDonation程序开发和评估以器官捐赠公平为重点的数据工具， 适应不同的地理和干预措施，以监测和指导社区一级的干预措施， 我们拟议的器官捐献数据工具将描述县、种族和民族级别的器官捐献 监测器官捐赠的差异（目标1）。我们将通过多渠道扩大TalkDonation的实施， 与明尼苏达州、南达科他州和北达科他州的部落社区分阶段接触， 支持器官捐赠。我们将举办参与式工作坊，以了解社区的观点 并为北方大平原土著美国人社区的独特需求量身定制材料。(Aim 2）。我们将 使用调查和深入访谈来评估学习健康系统模型的使用情况， 开展TalkDonation运动，并使用公平数据工具进行监测。我们将使用RE- AIM（Reach，Effectiveness，Adoption，Implementation，and Maintenance）实施框架 确定实施成果，以促进规模扩大和可持续性（目标3）。这项研究将使我们能够 建立系统的结果反馈回路，为其他经历过 健康差距和其他实体器官移植领域以及组织捐赠。此外，拟议的 研究将提高器官捐献系统的意识和透明度， 社区对移植系统的信任，减少持续的不平等。

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.