Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.
Am J Intellect Dev Disabil
; 129(3): 231-241, 2024 May 01.
Article
em En
| MEDLINE
| ID: mdl-38657962
ABSTRACT
Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Deficiências do Desenvolvimento
/
Deficiência Intelectual
Limite:
Humans
País/Região como assunto:
America do norte
Idioma:
En
Revista:
Am J Intellect Dev Disabil
Assunto da revista:
TRANSTORNOS MENTAIS
Ano de publicação:
2024
Tipo de documento:
Article