New York City Sickle Cell Implementation Science Consortium

纽约市镰状细胞实施科学联盟

基本信息

批准号：
9180422
负责人：
Lynne D. Richardson
金额：
$ 77.93万
依托单位：
ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-08-05 至 2022-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9180422
关键词：
Accident and Emergency department Acute Address Adolescent Adult Ambulatory Care Area Award Back Biological Specimen Banks Caregivers Caring Centers for Disease Control and Prevention (U.S.)Cities Clinical Clinical Informatics Cluster randomized trial Collaborations Communities Community Actions Community Health Centers Community Networks Community Participation Complement Comprehensive Health Care Data Coordinating Center Data Reporting Development Effectiveness Emergency Care Emergency Department Physician Emergency Medicine Enrollment Evaluation Funding Goals Guidelines Health Health Services Accessibility Health system Hematologist Hematology Hospitals Individual Informatics Interdisciplinary Study Intervention Knowledge Laboratories Learning Life Location Measures Modeling Multi-Institutional Clinical Trial National Heart, Lung, and Blood Institute Needs Assessment New York New York City Outcome Pain Pain management Patient-Focused Outcomes Patients Penetration Phase Population Positioning Attribute Primary Health Care Process Provider Quality of life Randomized Registries Reporting Research Research Infrastructure Resources Sickle Cell Sickle Cell Anemia Site Specialist Testing United States National Institutes of Health base community partnership data registry density design disease registry implementation research implementation science implementation trial improved programs randomized trial research study telehealth tool virtual

项目摘要

The goal of the New York City Sickle Cell Implementation Science Consortium (NYCSIS) is to leverage a `learning laboratory' of six hospitals and eleven ambulatory practices within the Mount Sinai Health System (MSHS) to improve penetration of best practices for adults and adolescents with Sickle Cell Disease (SCD). New York City has one of the largest SCD populations in the US, and MSHS provides SCD care to over 700 adults and adolescents. The NYCSIS team and its community partners have identified three critical knowledge-to-action gaps: 1) improving pain management in adult emergency departments (ED), 2) reconnecting individuals who as adults use only the ED back into longitudinal care and 3) delivering comprehensive care in low-density (i.e. smaller numbers of people with SCD) settings with limited access to expert SCD hematologists. Our setting and research infrastructure position us well to address these three issues as MSHS has a robust multi-site emergency medicine research infrastructure (with access to hundreds of adults with SCD who do not utilize primary care) as well as low-density hospitals and community health centers where the full complement of experts (e.g. hematologists and other specialists) are not available. We propose four aims. Aim 1: Conduct a whole-community needs assessment to a) identify additional areas of need, and b) for the three interventions already developed, to understand barriers and facilitators to scaling and implementing them at each care locations; Aim 2: Design implementation research studies that address the identified issues of importance; Aim 3: Participate in the development of the SCD registry in collaboration with the Data Coordinating Center and NHLBI; and Aim 4: Conduct implementation studies that test multi-modal, multi-sector interventions to a) improve emergency care of SCD pain, b) reconnect unaffiliated adults into comprehensive care and c) deliver comprehensive care in low SCD density settings. The NYCSIS team has the resources and community network to rigorously collect and integrate registry data with other U01 sites, and to execute implementation studies that address the needs of urban SCD populations, particularly in low-density care settings with limited access to SCD experts.

纽约市镰状细胞实施科学联盟 (NYCSIS) 的目标是利用由六家医院和 11 家门诊诊所组成的“学习实验室” 西奈山卫生系统 (MSHS) 旨在提高成人和儿童最佳实践的渗透率患有镰状细胞病（SCD）的青少年。纽约市拥有最大的 SCD 之一 MSHS 为 700 多名成人和青少年提供 SCD 护理。这 NYCSIS 团队及其社区合作伙伴确定了三个关键的知识付诸行动差距：1) 改善成人急诊科 (ED) 的疼痛管理，2) 重新建立联系成年后仅使用 ED 进行纵向护理的个人，以及 3) 提供服务低密度（即 SCD 患者数量较少）环境中的综合护理接触 SCD 血液专家的机会有限。我们的环境和研究基础设施使我们处于有利地位 MSHS 拥有强大的多站点急救医学，可以很好地解决这三个问题研究基础设施（可以接触到数百名患有 SCD 的成年人，他们不利用初级护理）以及低密度医院和社区卫生中心，其中充分补充没有专家（例如血液学家和其他专家）。我们提出四个目标。目标 1：进行整个社区需求评估，以 a) 确定其他需求领域， b) 对于已经制定的三项干预措施，了解阻碍和促进因素在每个护理地点扩展和实施它们；目标2：设计实施研究解决已确定的重要问题的研究；目标3：参与开发与数据协调中心和 NHLBI 合作进行 SCD 登记；和目标 4：进行实施研究，测试多模式、多部门干预措施，以 a) 改善 SCD 疼痛的紧急护理，b) 将无亲属关系的成年人重新纳入综合护理，以及 c) 在低 SCD 密度环境中提供全面护理。 NYCSIS 团队拥有资源和社区网络，严格收集注册数据并将其与其他 U01 站点集成，并开展满足城市 SCD 人口需求的实施研究，特别是在接触 SCD 专家的机会有限的低密度护理环境中。