Dataset Information

Unlocking the Potential of Electronic Health Records for Health Research.

ABSTRACT: Electronic health records (EHRs), originally designed to facilitate health care delivery, are becoming a valuable data source for health research. EHR systems have two components, both of which have various components, and points of data entry, management, and analysis. The "front end" refers to where the data are entered, primarily by healthcare workers (e.g. physicians and nurses). The second component of EHR systems is the electronic data warehouse, or "back-end," where the data are stored in a relational database. EHR data elements can be of many types, which can be categorized as structured, unstructured free-text, and imaging data. The Sunrise Clinical Manager (SCM) EHR is one example of an inpatient EHR system, which covers the city of Calgary (Alberta, Canada). This system, under the management of Alberta Health Services, is now being explored for research use. The purpose of the present paper is to describe the SCM EHR for research purposes, showing how this generalizes to EHRs in general. We further discuss advantages, challenges (e.g. potential bias and data quality issues), analytical capacities, and requirements associated with using EHRs in a health research context.

SUBMITTER: Lee S

PROVIDER: S-EPMC7473254 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Unlocking the Potential of Electronic Health Records for Health Research.

Lee S S Xu Y Y D Apos Souza A G AG Martin E A EA Doktorchik C C Zhang Z Z Quan H H

International journal of population data science 20200130 1

Electronic health records (EHRs), originally designed to facilitate health care delivery, are becoming a valuable data source for health research. EHR systems have two components, both of which have various components, and points of data entry, management, and analysis. The "front end" refers to where the data are entered, primarily by healthcare workers (e.g. physicians and nurses). The second component of EHR systems is the electronic data warehouse, or "back-end," where the data are stored in ...[more]

PMID: 32935049

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Project description:BackgroundEHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.MethodsWe conducted 15 focus groups (n =?110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters.ResultsFor initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable-typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions.ConclusionsExternal validity relies heavily on researchers' success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.

Dataset Information

Unlocking the Potential of Electronic Health Records for Health Research.

Publications

Unlocking the Potential of Electronic Health Records for Health Research.

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