Disability Community Engagement Partner Project-Pediatrics

残疾社区参与合作伙伴项目-儿科

基本信息

批准号：
10879969
负责人：
Charles Everet Drum
金额：
$ 65万
依托单位：
AMERICAN ASSN ON HEALTH AND DISABILITY
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 2028-08-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10879969
关键词：
Address Adolescent Adoption Adult Age All of Us Research Program Area Authorization documentation Awareness Biological Models Biomedical Research Caring Child Childhood Clinical Collection Communication Communities Complex Consent Data Data Set Development Dimensions Disabled Children Disease Disease Progression Education Educational Activities Educational Curriculum Electronic Health Record Electronic Mail Enrollment Ensure Environment Evaluation Exclusion Family Foundations Funding Gatekeeping Genetic Health Health Personnel Health behavior change Healthcare Height Human Resources Incidence Infant Knowledge Life Style Link Longitudinal, observational study Measurement Medical Methods Modeling Modification Notification Observational Study Outcome Parents Participant Pediatrics Phase Population Prevalence Prevention strategy Process Provider Reporting Research Research Design Research Personnel Resources Role Sampling Scanning Self Direction Services Site Solid Specialist Surveys Theoretical model Time Training Trust United States United States National Institutes of Health Weight Work authority base cohort community engagement design disability diverse data experience follow-up health determinants implementation design individual variation innovation interest member novel strategies outreach patient engagement pediatrician precision medicine programs prospective recruit social socioeconomics success timeline treatment strategy

项目摘要

ABSTRACT The National Institutes of Health (NIH) is building one of the most comprehensive, observational research initiatives ever conducted in the United States through the All of Us Research Project (AoURP). Once limited to adult participants, AoURP is expanding to include pediatric participants. The objective of the Disability Community Engagement Partner Project-Pediatrics (DCEPPPEDS) is to engage and facilitate the participation of the pediatric disability population in the AoURP to ensure better health outcomes and individualized health care for this population. Three Specific Aims have been identified for the project including: 1) Establishing and activating a Pediatric Disability Consortium; 2) Implementing a facilitated enrollment pilot program with CSHCN Families; and 3) Developing and implementing a CSHCN/ Disability and Effective Communication and Enrollment Practices Training Curriculum for AoU Consortium members. Project activities will be guided by a Pediatric Disability Consortium formed from disability organizations, pediatric clinical providers, and families (e.g., parents, guardians, conservators of children with disabilities). A comprehensive DCEPP-PEDS Outreach and Engagement Communications Plan will be developed and implemented across each year of the project. Several implementation and development models inform the project’s design and methods, including the Community and Participant Engagement (CPE) Framework, the transtheoretical model of health behavior change (TTM), the Point-to-Middle-to-Target (P-M-T) Model, and the Analysis, Design, Development, Implementation, and Evaluation (ADDIE) Model, and Landscape and Environmental Scan principles. The solid foundation of implementation and development models, key personnel with pediatric disability experience, staff with the lived experience of disability, and organizational experience, including the adult-focused Disability Community Engagement Partner Project (DCEPP), should ensure the success of the project.

抽象的美国国立卫生研究院 (NIH) 正在建设最全面、最具观察性的研究中心之一美国通过“我们所有人研究项目”开展的研究活动 (AoURP) 曾经仅限于成人参与者，AoURP 正在扩展到包括儿童。参与者。残疾社区参与合作伙伴项目 - 儿科 (DCEPP PEDS) 的目标是吸引并促进儿科残疾人口参与 AoURP 确保该人群获得更好的健康结果和个性化医疗保健。该项目确定了三个具体目标，包括： 1) 建立和启动儿科残疾联盟 2) 实施便利登记试点；与 CSHCN 家庭合作的计划；以及 3) 制定和实施 CSHCN/残疾和 AoU 联盟有效沟通和招生实践培训课程成员。项目活动将由由残疾组成的儿科残疾联盟指导组织、儿科临床提供者和家庭（例如父母、监护人、监护人）残疾儿童）。沟通计划将在项目的每一年制定和实施。几种实施和开发模型为项目的设计和方法提供了信息，包括社区和参与者参与（CPE）框架、跨理论健康行为改变模型（TTM）、点到中到目标（P-M-T）模型和分析、设计、开发、实施和评估 (ADDIE) 模型，以及景观和环境扫描原则。实施和发展模式基础扎实，骨干人员以儿科为主残疾经验、具有残疾生活经验的工作人员以及组织经验，包括以成人为中心的残疾人社区参与合作伙伴项目 (DCEPP)，应该确保项目的成功。