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