RESUMEN

BACKGROUND: Child abuse and neglect, once viewed as a social problem, is now an epidemic. Moreover, health providers agree that existing stereotypes may link racial and social class issues to child abuse. The broad adoption of electronic health records (EHRs) in clinical settings offers a new avenue for addressing this epidemic. To reduce racial bias and improve the development, implementation, and outcomes of machine learning (ML)-based models that use EHR data, it is crucial to involve marginalized members of the community in the process. OBJECTIVE: This study elicited Black and Latinx primary caregivers' viewpoints regarding child abuse and neglect while living in underserved communities to highlight considerations for designing an ML-based model for detecting child abuse and neglect in emergency departments (EDs) with implications for racial bias reduction and future interventions. METHODS: We conducted a qualitative study using in-depth interviews with 20 Black and Latinx primary caregivers whose children were cared for at a single pediatric tertiary-care ED to gain insights about child abuse and neglect and their experiences with health providers. RESULTS: Three central themes were developed in the coding process: (1) primary caregivers' perspectives on the definition of child abuse and neglect, (2) primary caregivers' experiences with health providers and medical documentation, and (3) primary caregivers' perceptions of child protective services. CONCLUSIONS: Our findings highlight essential considerations from primary caregivers for developing an ML-based model for detecting child abuse and neglect in ED settings. This includes how to define child abuse and neglect from a primary caregiver lens. Miscommunication between patients and health providers can potentially lead to a misdiagnosis, and therefore, have a negative impact on medical documentation. Additionally, the outcome and application of the ML-based models for detecting abuse and neglect may cause additional harm than expected to the community. Further research is needed to validate these findings and integrate them into creating an ML-based model.

RESUMEN

OBJECTIVE: The study provides considerations for generating a phenotype of child abuse and neglect in Emergency Departments (ED) using secondary data from electronic health records (EHR). Implications will be provided for racial bias reduction and the development of further decision support tools to assist in identifying child abuse and neglect. MATERIALS AND METHODS: We conducted a qualitative study using in-depth interviews with 20 pediatric clinicians working in a single pediatric ED to gain insights about generating an EHR-based phenotype to identify children at risk for abuse and neglect. RESULTS: Three central themes emerged from the interviews: (1) Challenges in diagnosing child abuse and neglect, (2) Health Discipline Differences in Documentation Styles in EHR, and (3) Identification of potential racial bias through documentation. DISCUSSION: Our findings highlight important considerations for generating a phenotype for child abuse and neglect using EHR data. First, information-related challenges include lack of proper previous visit history due to limited information exchanges and scattered documentation within EHRs. Second, there are differences in documentation styles by health disciplines, and clinicians tend to document abuse in different document types within EHRs. Finally, documentation can help identify potential racial bias in suspicion of child abuse and neglect by revealing potential discrepancies in quality of care, and in the language used to document abuse and neglect. CONCLUSIONS: Our findings highlight challenges in building an EHR-based risk phenotype for child abuse and neglect. Further research is needed to validate these findings and integrate them into creation of an EHR-based risk phenotype.

Asunto(s)

RESUMEN

Child abuse and neglect are public health issues impacting communities throughout the United States. The broad adoption of electronic health records (EHR) in health care supports the development of machine learning-based models to help identify child abuse and neglect. Employing EHR data for child abuse and neglect detection raises several critical ethical considerations. This article applied a phenomenological approach to discuss and provide recommendations for key ethical issues related to machine learning-based risk models development and evaluation: (1) biases in the data; (2) clinical documentation system design issues; (3) lack of centralized evidence base for child abuse and neglect; (4) lack of "gold standard "in assessment and diagnosis of child abuse and neglect; (5) challenges in evaluation of risk prediction performance; (6) challenges in testing predictive models in practice; and (7) challenges in presentation of machine learning-based prediction to clinicians and patients. We provide recommended solutions to each of the 7 ethical challenges and identify several areas for further policy and research.

Asunto(s)