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

基本信息

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
项目类别：
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

项目摘要

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.

项目概要/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患有器官衰竭。不幸的是，每年有超过 10,000 人在候补名单上死亡或病重由于器官极度短缺。美洲原住民 (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献者。增加器官捐献是关键减少移植机会差异的战略。尽管进行了大量的研究干预以增加过去两年美国的器官捐献、候补和移植率没有增加几十年。器官获取组织 (OPO) 是死者捐赠过程的主要推动者并为当地服务地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 活动将增加 NA 器官捐赠由 LifeSource（一家服务于明尼苏达州的 OPO）在明尼阿波利斯市区开发并试点以及周边国家。然而，OPO 面临持续改进和扩大干预措施的障碍因为国家移植系统不提供反馈循环来确定干预措施在个别社区中有效。专注于嵌入式的学习健康系统 (LHS) 模型研究、系统思考以及将结果数据整合到实践中可以提供可持续的国家使用公开数据监测器官捐献结果的系统。器官捐献 LHS 将使用 TalkDonation 计划开发和评估以器官捐赠公平为中心的数据工具可适应不同地域和干预措施，以监测和指导整个社区的干预措施我们。拟议的器官捐赠数据工具将描述县、种族和民族级别的器官捐赠监测器官捐献方面的差异（目标 1）。我们将通过多种方式扩大 TalkDonation 的实施分阶段与明尼苏达州、南达科他州和北达科他州的部落社区接触，以增加支持器官捐献。我们将举办参与式研讨会以了解社区的观点并根据北大平原美洲原住民社区的独特需求定制材料。（目标 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实施 TalkDonation 活动并使用权益数据工具进行监控。我们将使用 RE- AIM（范围、有效性、采用、实施和维护）实施框架和确定实施成果以促进规模化和可持续性（目标 3）。这项研究将使我们能够建立一个系统的结果反馈循环，为其他经历过这种情况的人群提供干预措施健康差异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认识和透明度，有可能改善社区对移植系统的信任并减少持续存在的差异。