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

学习健康系统可增加健康差异人群的器官捐赠和公平性

• 批准号: 10731576
• 负责人: Cory R Schaffhausen
• 金额: $ 17.88万
• 依托单位: HENNEPIN HEALTHCARE RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2028-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10731576
• 关键词: Affect; Awareness; Biological Models; Collaborations; Communities; Community Outreach; County; Coupled; Data; Disparity; Education; Educational workshop; Effectiveness; Equity; Ethnic Origin; Ethnic Population; Face; Feedback; Geography; Goals; Great Plains; Health; Health Service Area; Health Services; Health system; Individual; Intervention; Interview; Kidney Transplantation; Learning; Link; Medical; Methods; Minnesota; Minority; Monitor; Native Americans; North Dakota; Organ; Organ Donations; Organ Donor; Organ Procurements; Organ Transplantation; Organ failure; Outcome; Patient-Focused Outcomes; Patients; Performance; Phase; Population; Process; Professional Organizations; Protocols documentation; Quality of life; Questionnaires; Race; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Relationship-Building; Reporting; Research; Research Infrastructure; Research Personnel; Resources; Solid; South Dakota; Standardization; Surveys; System; System for Public Use; Therapeutic; Thinking; Time trend; Tissue Donations; Transplant Recipients; Transplantation; Trust; United States; Waiting Lists; Work; access disparities; community engagement; dashboard; data infrastructure; data resource; data tools; demographics; disparity reduction; effective intervention; effectiveness evaluation; experience; family support; health disparity; implementation framework; implementation outcomes; improved; interdisciplinary collaboration; intervention refinement; iterative design; liver transplantation; mortality; programs; racial disparity; racial population; transplant registry; tribal community; underserved community

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.

项目摘要/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 遭受器官衰竭。不幸的是，超过10,000死亡或每年在候补名单上生病 由于极端的器官短缺。美洲原住民（NA）和其他少数民族不太可能接受 器官移植，也不太可能成为器官捐献者。增加器官捐赠是关键的 减少访问移植方面差异的策略。尽管进行了许多研究干预措施以增加 在过去的两个 几十年。器官采购组织（OPO）是已故捐赠过程的主要驱动力 并为当地服务领域提供教育和家庭支持。 OPO是传播的关键资源 通过当地社区关系，整个美国的干预措施。聊天运动旨在增加 NA器官捐赠是由Opo服务于明尼苏达州的OPO开发并在Minneapolis驾驶的 和周围的状态。但是，OPO面临着不断改进和扩展干预措施的障碍 因为国家移植系统没有提供反馈循环来确定哪些干预措施 在个别社区有效。学习卫生系统（LHS）模型，专注于嵌入式 研究，系统思考和结果数据融入实践可以提供可持续的民族 使用公开可用数据监视器官捐赠结果的系统。器官捐赠的LHS将 使用TalkDonation计划来开发和评估器官捐赠以股权为中心的数据工具 跨地理和干预措施可适应，以监视和指导社区级干预措施 我们。拟议的器官捐赠数据工具将描述县，种族和种族水平的器官捐赠 监测器官捐赠的差异（AIM 1）。我们将通过多个 与明尼苏达州，南达科他州和北达科他州的部落社区进行分阶段接触以增加 支持器官捐赠。我们将举办参与式研讨会以了解社区观点 并为北部大平原的美国原住民社区量身定制材料。 （目标2）。我们将 使用调查和深入的访谈来评估学习卫生系统模型的使用 使用权益数据工具实施谈话活动和监视。我们将使用重新 瞄准（触及，有效性，采用，实施和维护）实施框架和 确定实施结果以促进扩展和可持续性（AIM 3）。这项研究将使我们能够 开发系统的结果反馈循环，以告知其他人群的干预措施 健康差异和其他固体器官移植场以及组织捐赠。另外，提议 研究将提高器官捐赠系统的意识和透明度，并有可能改善 社区对移植系统的信任并降低持续差异。