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Enhancing uterine fibroid research through utilization of biorepositories linked to electronic medical record data.

ABSTRACT: Uterine leiomyomata (fibroids) affect up to 77% of women by menopause and account for $9.4 billion in yearly healthcare costs. Most studies rely on self-reported diagnosis, which may result in misclassification of controls since as many as 50% of cases are asymptomatic and thus undiagnosed. Our objective was to evaluate the performance and accuracy of a fibroid phenotyping algorithm constructed from electronic medical record (EMR) data, limiting to subjects with pelvic imaging.Our study population includes women from a clinical population at Vanderbilt University Medical Center (2008-2012). Analyses were restricted to women 18 years and older with at least one fibroid diagnosis confirmed by imaging for cases or at least two separate pelvic imaging procedures without a diagnosis for controls. We randomly reviewed 218 records to evaluate the accuracy of our algorithm and assess the indications for pelvic imaging. Participant characteristics and indications for imaging were compared between cases and controls in unadjusted and adjusted logistic regression analyses.Our algorithm had a positive predictive value of 96% and negative predictive value of 98%. Increasing age (odds ratio=1.05, 95% confidence interval 1.03-1.08) and Black race (odds ratio=2.15, 95% confidence interval 1.18-3.94) were identified as risk factors for fibroids. The most common indications for imaging in both cases and controls were pain, bleeding, and reproductive factors, and the most common imaging modality was a pelvic ultrasound.These data suggest that using biorepositories linked to EMR data is a feasible way to identify populations of imaged women that facilitate investigations of fibroid risk factors.

SUBMITTER: Feingold-Link L

PROVIDER: S-EPMC4267124 | biostudies-literature | 2014 Dec

REPOSITORIES: biostudies-literature

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Enhancing uterine fibroid research through utilization of biorepositories linked to electronic medical record data.

Feingold-Link Lani L Edwards Todd L TL Jones Sarah S Hartmann Katherine E KE Velez Edwards Digna R DR

Journal of women's health (2002) 20141201 12

<h4>Background</h4>Uterine leiomyomata (fibroids) affect up to 77% of women by menopause and account for $9.4 billion in yearly healthcare costs. Most studies rely on self-reported diagnosis, which may result in misclassification of controls since as many as 50% of cases are asymptomatic and thus undiagnosed. Our objective was to evaluate the performance and accuracy of a fibroid phenotyping algorithm constructed from electronic medical record (EMR) data, limiting to subjects with pelvic imaging ...[more]

PMID: 25495367

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Project description:ImportanceWhile dosing reminders for glaucoma medications have been shown to increase drug adherence, an outstanding limitation preventing broad adoption is difficulty linking reminders to medication in each patient's electronic health record (EHR).ObjectiveTo examine the feasibility of implementing an EHR-linked, automated reminder system for glaucoma medications and assess patient satisfaction with it.Design, setting, and participantsIn this prospective, cross-sectional study, patients receiving glaucoma medications were recruited from a university-based glaucoma clinic from April 2017 to January 2018. Analysis began in February 2018.ExposuresA web-based application was added to the EHR patient portal, allowing patients to configure telecommunication-based reminders for their glaucoma medications. For all potential participants, basic information was collected to determine risk of nonadherence with glaucoma medications. Those consenting to participate then answered questions on medication adherence, reminders, and their likelihood of using EHR-linked reminders. They then configured reminders using the EHR patient portal. After 3 months, they answered questions about their satisfaction with the system.Main outcomes and measuresProportions of patients and high-risk patients willing to use the reminders, and patient satisfaction with the system.ResultsOf 147 patients approached, 100 (68%) agreed to participate, of whom the majority were men (54 [54%]) and white (51 [51%]), with a mean (SD) age of 65 (12.4) years. There were no differences between those willing and unwilling to participate, except for a slightly lower self-reported medication adherence rate among those who participated (mean [SD], 91% [13.6%] vs 97% [6.0%]). Based on a previously validated risk assessment score, 9% (9 of 100) of participants were categorized as being at high risk for poor adherence (≥50% probability of nonadherence) compared with 11% (5 of 47) of nonparticipants. Of 100 participants, 94 ultimately configured reminders, of whom 89 (95%) completed follow-up. On follow-up, 74% (n = 66; 95% CI, 65-83) of participants found the reminders to be useful, 15% (n = 13) were neutral, and 11% (n = 10) found them not useful. Most participants (72 [81%]; 95% CI, 77-85) had help configuring reminders.Conclusions and relevanceElectronic health records-linked reminders had good uptake and were well received among patients at a tertiary glaucoma clinic. These portals may represent a new and convenient method of allowing patients to link their glaucoma medications to automated reminders, although the generalizability of these results and the effect on glaucoma outcomes remains unknown.

Project description:BackgroundElectronic health records (EHRs) are ubiquitous. Yet little is known about the use of EHRs for prospective research purposes, and even less is known about patient perspectives regarding the use of their EHR for research.ObjectiveThis paper reports results from the initial obesity project from the Greater Plains Collaborative that is part of the Patient-Centered Outcomes Research Institute's National Patient-Centered Clinical Research Network (PCORNet). The purpose of the project was to (1) assess the ability to recruit samples of adults of child-rearing age using the EHR; (2) prospectively assess the willingness of adults of child-rearing age to participate in research, and their willingness (if parents) to have their children participate in medical research; and (3) to assess their views regarding the use of their EHRs for research.MethodsThe EHRs of 10 Midwestern academic medical centers were used to select patients. Patients completed a survey that was designed to assess patient willingness to participate in research and their thoughts about the use of their EHR data for research. The survey included questions regarding interest in medical research, as well as basic demographic and health information. A variety of contact methods were used.ResultsA cohort of 54,269 patients was created, and 3139 (5.78%) patients responded. Completers were more likely to be female (53.84%) and white (85.84%). These and other factors differed significantly by site. Respondents were overwhelmingly positive (83.9%) about using EHRs for research.ConclusionsEHRs are an important resource for engaging patients in research, and our respondents concurred. The primary limitation of this work was a very low response rate, which varied by the method of contact, geographic location, and respondent characteristics. The primary strength of this work was the ability to ascertain the clinically observed characteristics of nonrespondents and respondents to determine factors that may contribute to participation, and to allow for the derivation of reliable study estimates for weighting responses and oversampling of difficult-to-reach subpopulations. These data suggest that EHRs are a promising new and effective tool for patient-engaged health research.

Dataset Information

Enhancing uterine fibroid research through utilization of biorepositories linked to electronic medical record data.

Publications

Enhancing uterine fibroid research through utilization of biorepositories linked to electronic medical record data.

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