Disability Community Engagement Partner Project-Pediatrics

残疾社区参与合作伙伴项目-儿科

• 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
• 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

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.

摘要 美国国立卫生研究院（NIH）正在建立一个最全面的， 美国通过全民研究计划进行的研究活动 （AoURP）。一旦仅限于成人参与者，AoURP正在扩大到包括儿科 参与者 残疾人社区参与伙伴项目-儿科（DCEPP）的目标PEDS）旨在吸引和促进儿科残疾人群参与 AoURP旨在确保为这一人群提供更好的健康结果和个性化的医疗保健。 该项目的三个具体目标是：1）建立和 激活儿科残疾联合会; 2）实施便利登记试点 3）制定和实施CSHCN/残疾人方案， AoU联盟有效沟通和招生实践培训课程 成员 项目活动将由一个由残疾人组成的儿科残疾联合会指导。 组织、儿科临床提供者和家庭（例如，父母，监护人， 残疾儿童）。全面的DCEPP-PEDS外联和参与 沟通计划将在项目的每一年制定和实施。 几个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（TTM）模型、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。 实施和发展模式的坚实基础，儿科骨干人才配备 残疾经验、有残疾生活经验的工作人员和组织经验， 包括以成人为重点的残疾人社区参与伙伴项目（DCEPP），应 确保项目的成功。