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.