Informative missingness in electronic health record systems: the curse of knowing.
Ontology highlight
ABSTRACT:
SUBMITTER: Groenwold RHH
PROVIDER: S-EPMC7371469 | biostudies-literature | 2020
REPOSITORIES: biostudies-literature
Publications
Informative missingness in electronic health record systems: the curse of knowing.
Diagnostic and prognostic research 20200702
Electronic health records provide a potentially valuable data source of information for developing clinical prediction models. However, missing data are common in routinely collected health data and often missingness is informative. Informative missingness can be incorporated in a clinical prediction model, for example by including a separate category of a predictor variable that has missing values. The predictive performance of such a model depends on the transportability of the missing data me ...[more]
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Project description:BackgroundIn electronic health records, patterns of missing laboratory test results could capture patients' course of disease as well as reflect clinician's concerns or worries for possible conditions. These patterns are often understudied and overlooked. This study aims to identify informative patterns of missingness among laboratory data collected across 15 healthcare system sites in three countries for COVID-19 inpatients.MethodsWe collected and analyzed demographic, diagnosis, and laboratory data for 69,939 patients with positive COVID-19 PCR tests across three countries from 1 January 2020 through 30 September 2021. We analyzed missing laboratory measurements across sites, missingness stratification by demographic variables, temporal trends of missingness, correlations between labs based on missingness indicators over time, and clustering of groups of labs based on their missingness/ordering pattern.ResultsWith these analyses, we identified mapping issues faced in seven out of 15 sites. We also identified nuances in data collection and variable definition for the various sites. Temporal trend analyses may support the use of laboratory test result missingness patterns in identifying severe COVID-19 patients. Lastly, using missingness patterns, we determined relationships between various labs that reflect clinical behaviors.ConclusionIn this work, we use computational approaches to relate missingness patterns to hospital treatment capacity and highlight the heterogeneity of looking at COVID-19 over time and at multiple sites, where there might be different phases, policies, etc. Changes in missingness could suggest a change in a patient's condition, and patterns of missingness among laboratory measurements could potentially identify clinical outcomes. This allows sites to consider missing data as informative to analyses and help researchers identify which sites are better poised to study particular questions.
| S-EPMC10849195 | biostudies-literature
Project description:Several reviews and case reports have described how information derived from the analysis of genomes are currently included in electronic health records (EHRs) for the purposes of supporting clinical decisions. Since the introduction of this new type of information in EHRs is relatively new (for instance, the widespread adoption of EHRs in the United States is just about a decade old), it is not surprising that a myriad of approaches has been attempted, with various degrees of success. EHR systems undergo much customization to fit the needs of health systems; these approaches have been varied and not always generalizable. The intent of this article is to present a high-level view of these approaches, emphasizing the functionality that they are trying to achieve, and not to advocate for specific solutions, which may become obsolete soon after this review is published. We start by broadly defining the end goal of including genomics in EHRs for healthcare and then explaining the various sources of information that need to be linked to arrive at a clinically actionable genomics analysis using a pharmacogenomics example. In addition, we include discussions on open issues and a vision for the next generation systems that integrate whole genome sequencing and EHRs in a seamless fashion.
| S-EPMC5946823 | biostudies-literature
Project description:BackgroundElectronic health record (EHR) system users devise workarounds to cope with mismatches between workflows designed in the EHR and preferred workflows in practice. Although workarounds appear beneficial at first sight, they frequently jeopardize patient safety, the quality of care, and the efficiency of care.ObjectiveThis review aims to aid in identifying, analyzing, and resolving EHR workarounds; the Sociotechnical EHR Workaround Analysis (SEWA) framework was published in 2019. Although the framework was based on a large case study, the framework still required theoretical validation, refinement, and enrichment.MethodsA scoping literature review was performed on studies related to EHR workarounds published between 2010 and 2021 in the MEDLINE, Embase, CINAHL, Cochrane, or IEEE databases. A total of 737 studies were retrieved, of which 62 (8.4%) were included in the final analysis. Using an analytic framework, the included studies were investigated to uncover the rationales that EHR users have for workarounds, attributes characterizing workarounds, possible scopes, and types of perceived impacts of workarounds.ResultsThe SEWA framework was theoretically validated and extended based on the scoping review. Extensive support for the pre-existing rationales, attributes, possible scopes, and types of impact was found in the included studies. Moreover, 7 new rationales, 4 new attributes, and 3 new types of impact were incorporated. Similarly, the descriptions of multiple pre-existing rationales for workarounds were refined to describe each rationale more accurately.ConclusionsSEWA is now grounded in the existing body of peer-reviewed empirical evidence on EHR workarounds and, as such, provides a theoretically validated and more complete synthesis of EHR workaround rationales, attributes, possible scopes, and types of impact. The revised SEWA framework can aid researchers and practitioners in a wider range of health care settings to identify, analyze, and resolve workarounds. This will improve user-centered EHR design and redesign, ultimately leading to improved patient safety, quality of care, and efficiency of care.
| S-EPMC8965666 | biostudies-literature
Project description:Background and study aims
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Who can participate?
Adult colorectal cancer patients being treated at the National Center for Tumor Diseases (NCT) in Heidelberg.
What does the study involve?
There are two part to this study. The first part involves focus groups, in which a group of people are asked their opinion and attitudes towards, for example, an idea, product or service. Here, focus groups are set up that involve the patients, doctors and other health professionals to discuss current problems with the coordination of care offered to cancer patients, as well as discuss what people want to get from using PEPA (i.e. user requirements). The PEPA-prototype is then developed taking into account the conclusions from the focus groups. In the second part of the study, patients are encouraged to use the PEPA-prototype to prepare and follow up meetings with their physicians.
| 2424890 | ecrin-mdr-crc
Project description:ImportanceUnderstanding how the electronic health record (EHR) system changes clinician work, productivity, and well-being is critical. Little is known regarding global variation in patterns of use.ObjectiveTo provide insights into which EHR activities clinicians spend their time doing, the EHR tools they use, the system messages they receive, and the amount of time they spend using the EHR after hours.Design, setting, and participantsThis cross-sectional study analyzed the deidentified metadata of ambulatory care health systems in the US, Canada, Northern Europe, Western Europe, the Middle East, and Oceania from January 1, 2019, to August 31, 2019. All of these organizations used the EHR software from Epic Systems and represented most of Epic Systems's ambulatory customer base. The sample included all clinicians with scheduled patient appointments, such as physicians and advanced practice practitioners.ExposuresClinician EHR use was tracked by deidentified and aggregated metadata across a variety of clinical activities.Main outcomes and measuresDescriptive statistics for clinician EHR use included time spent on clinical activities, note documentation (as measured by the percentage of characters in the note generated by automated or manual data entry source), messages received, and time spent after hours.ResultsA total of 371 health systems were included in the sample, of which 348 (93.8%) were located in the US and 23 (6.2%) were located in other countries. US clinicians spent more time per day actively using the EHR compared with non-US clinicians (mean time, 90.2 minutes vs 59.1 minutes; P < .001). In addition, US clinicians vs non-US clinicians spent significantly more time performing 4 clinical activities: notes (40.7 minutes vs 30.7 minutes; P < .001), orders (19.5 minutes vs 8.75 minutes; P < .001), in-basket messages (12.5 minutes vs 4.80 minutes; P < .001), and clinical review (17.6 minutes vs 14.8 minutes; P = .01). Clinicians in the US composed more automated note text than their non-US counterparts (77.5% vs 60.8% of note text; P < .001) and received statistically significantly more messages per day (33.8 vs 12.8; P < .001). Furthermore, US clinicians used the EHR for a longer time after hours, logging in 26.5 minutes per day vs 19.5 minutes per day for non-US clinicians (P = .01). The median US clinician spent as much time actively using the EHR per day (90.1 minutes) as a non-US clinician in the 99th percentile of active EHR use time per day (90.7 minutes) in the sample. These results persisted after controlling for organizational characteristics, including structure, type, size, and daily patient volume.Conclusions and relevanceThis study found that US clinicians compared with their non-US counterparts spent substantially more time actively using the EHR for a wide range of clinical activities or tasks. This finding suggests that US clinicians have a greater EHR burden that may be associated with nontechnical factors, which policy makers and health system leaders should consider when addressing clinician wellness.
| S-EPMC7737152 | biostudies-literature
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| S-EPMC4464930 | biostudies-literature
Project description:People are likely to use their own knowledge as a frame of reference when they try to assess another person's perspective. Due to this egocentric anchoring, people often overestimate the extent to which others share their point of view. This study investigated which type of feedback (if any) stimulates perceivers to make estimations of another person's perspective that are less biased by egocentric knowledge. We allocated participants to one of the three feedback conditions (no feedback, accuracy feedback, narrative feedback). Findings showed that participants who were given feedback adjusted their perspective-judgement more than those who did not receive feedback. They also showed less egocentric projection on future assessments. Participants adjusted their perspective within the same trial to the same degree for both feedback types. However, participants' egocentric bias was only reduced when they received narrative feedback and not when they received accuracy feedback about their performance. Implications of these findings for theories of perspective-taking are discussed.
| S-EPMC8107504 | biostudies-literature
Project description:Biobanks are made all the more valuable when the biological samples they hold can be linked to health information collected in research, electronic health records, or public health practice. Public trust in such systems that share health information for research and health care practice is understudied. Our research examines characteristics of the general public that predict trust in a health system that includes researchers, health care providers, insurance companies and public health departments. We created a 119-item survey of predictors and attributes of system trust and fielded it using Amazon's MTurk system (n = 447). We found that seeing one's primary care provider, having a favorable view of data sharing and believing that data sharing will improve the quality of health care, as well as psychosocial factors (altruism and generalized trust) were positively and significantly associated with system trust. As expected, privacy concern, but counterintuitively, knowledge about health information sharing were negatively associated with system trust. We conclude that, in order to assure the public's trust, policy makers charged with setting best practices for governance of biobanks and access to electronic health records should leverage critical access points to engage a diverse public in joint decision making.
| S-EPMC4384055 | biostudies-literature
Project description:BackgroundElectronic health record (EHR) data represent a critical resource for comparative effectiveness research, allowing investigators to study intervention effects in real-world settings with large patient samples. However, high levels of missingness in confounder variables is common, challenging the perceived validity of EHR-based investigations.MethodsWe investigated performance of multiple imputation and propensity score (PS) calibration when conducting inverse probability of treatment weights (IPTW)-based comparative effectiveness research using EHR data with missingness in confounder variables and outcome misclassification. Our motivating example compared effectiveness of immunotherapy versus chemotherapy treatment of advanced bladder cancer with missingness in a key prognostic variable. We captured complexity in EHR data structures using a plasmode simulation approach to spike investigator-defined effects into resamples of a cohort of 4361 patients from a nationwide deidentified EHR-derived database. We characterized statistical properties of IPTW hazard ratio estimates when using multiple imputation or PS calibration missingness approaches.ResultsMultiple imputation and PS calibration performed similarly, maintaining ≤0.05 absolute bias in the marginal hazard ratio even when ≥50% of subjects had missing at random or missing not at random confounder data. Multiple imputation required greater computational resources, taking nearly 40 times as long as PS calibration to complete. Outcome misclassification minimally increased bias of both methods.ConclusionOur results support multiple imputation and PS calibration approaches to missingness in missing completely at random or missing at random confounder variables in EHR-based IPTW comparative effectiveness analyses, even with missingness ≥50%. PS calibration represents a computationally efficient alternative to multiple imputation.
| S-EPMC10231933 | biostudies-literature