Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.
Value Health
; 23(12): 1639-1652, 2020 12.
Article
em En
| MEDLINE
| ID: mdl-33248520
ABSTRACT
OBJECTIVES:
The purpose of this study was to examine parental preferences for researchers accessing their child's electronic health record across 3 groups those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing).METHODS:
After extensive formative work, a discrete choice experiment was designed consisting of 5 attributes, each with 2 or 3 levels, including (1) type of researcher, (2) the use of personally identifiable information, (3) the use of sensitive information, (4) personal importance of research, and (5) return of results. Stratified mixed logit and latent class conditional logit models were examined.RESULTS:
Parents of children with FXS or ASD had relatively higher preferences for research conducted by nonprofits than parents of typically developing children. Parents of children with ASD also preferred research using non-identifiable and nonsensitive information. Parents of children with FXS or ASD also had preferences for research that was personally important and returned either summary or individual results. Although a few child and family characteristics were related to preferences, they did not overall define the subgroups of parents.CONCLUSIONS:
Although electronic health record preference research has been conducted with the general public, this is the first study to examine the opinions of parents who have a child with a known or suspected genetic condition. These parents were open to studies using their child's electronic health record because they may have more to gain from this type of research.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Contexto em Saúde:
1_ASSA2030
Problema de saúde:
1_sistemas_informacao_saude
Assunto principal:
Pais
/
Comportamento do Consumidor
/
Acesso à Informação
/
Pesquisa Biomédica
/
Registros Eletrônicos de Saúde
/
Doenças Genéticas Inatas
Tipo de estudo:
Observational_studies
/
Prognostic_studies
/
Risk_factors_studies
Aspecto:
Patient_preference
Limite:
Child, preschool
/
Female
/
Humans
/
Infant
/
Male
Idioma:
En
Revista:
Value Health
Assunto da revista:
FARMACOLOGIA
Ano de publicação:
2020
Tipo de documento:
Article