Dataset Information

Caring for trafficked and unidentified patients in the EHR shadows: Shining a light by sharing the data.

ABSTRACT:

Objective

Healthcare providers have key roles in the prevention of, detection of, and interventions for human trafficking. Yet caring for trafficked persons is particularly challenging: patients whose identities are unknown, unreliable, or false could receive subpar care from providers delivering care in a vacuum of relevant information. The application of precision medicine principles and integration of biometric data (including genetic information) could facilitate patient identification, enable longitudinal medical records, and improve continuity and quality of care for this vulnerable patient population. Scant empirical data exist regarding healthcare system preparedness and care for the needs of this vulnerable population nor data on perspectives on the use and risks of biometrics or genetic information for trafficked patients.

Methods

To address this gap, we conducted mixed-methods research involving semi-structured interviews with key informants, which informed a subsequent broad survey of physicians and registered nurses.

Results

Our findings support the perception that trafficked persons obtain care yet remain unnoticed or undocumented in the electronic health record. Our survey findings further reveal that healthcare providers remain largely unaware of human trafficking issues and are inadequately prepared to provide patient-centered care for trafficked and unidentified patients.

Conclusion

Meaningful efforts to design and implement precision medicine initiatives in an inclusive way that optimizes impacts are unlikely to succeed without concurrent efforts to increase general awareness of and preparedness to care for trafficked persons. Additional research is needed to examine properly the potential utility for biometrics to improve the delivery of care for trafficked patients.

SUBMITTER: Katsanis SH

PROVIDER: S-EPMC6417704 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Caring for trafficked and unidentified patients in the EHR shadows: Shining a light by sharing the data.

Katsanis Sara H SH Huang Elaine E Young Amanda A Grant Victoria V Warner Elizabeth E Larson Sharon S Wagner Jennifer K JK

PloS one 20190314 3

<h4>Objective</h4>Healthcare providers have key roles in the prevention of, detection of, and interventions for human trafficking. Yet caring for trafficked persons is particularly challenging: patients whose identities are unknown, unreliable, or false could receive subpar care from providers delivering care in a vacuum of relevant information. The application of precision medicine principles and integration of biometric data (including genetic information) could facilitate patient identificati ...[more]

PMID: 30870468

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Project description:Research on complex health conditions such as neurodevelopmental disorders increasingly relies on large-scale research and clinical studies that would benefit from data sharing initiatives. Organizations that share data stand to maximize the efficiency of invested research dollars, expedite research findings, minimize the burden on the patient community, and increase citation rates of publications associated with the data.This study examined ethics and governance information on websites of databases involving neurodevelopmental disorders to determine the availability of information on key factors crucial for comprehension of, and trust and participation in such initiatives.We identified relevant databases identified using online keyword searches. Two researchers reviewed each of the websites and identified thematic content using principles from grounded theory. The content for each organization was interrogated using the gap analysis method.Sixteen websites from data sharing organizations met our inclusion criteria. Information about types of data and tissues stored, data access requirements and procedures, and protections for confidentiality were significantly addressed by data sharing organizations. However, special considerations for minors (absent from 63%), controls to check if data and tissues are being submitted (absent from 81%), disaster recovery plans (absent from 81%), and discussions of incidental findings (absent from 88%) emerged as major gaps in thematic website content. When present, content pertaining to special considerations for youth, along with other ethics guidelines and requirements, were scattered throughout the websites or available only from associated documents accessed through live links.The complexities of sharing data acquired from children and adolescents will only increase with advances in genomic and neuro science. Our findings suggest that there is a need to improve the consistency, depth and accessibility of governance and policies on which these collaborations can lean specifically for vulnerable young populations.

Dataset Information

Caring for trafficked and unidentified patients in the EHR shadows: Shining a light by sharing the data.

Objective

Methods

Results

Conclusion

Publications

Caring for trafficked and unidentified patients in the EHR shadows: Shining a light by sharing the data.

Similar Datasets

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