Challenges in defining Long COVID: Striking differences across literature, Electronic Health Records, and patient-reported information.
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ABSTRACT:
SUBMITTER: Rando HM
PROVIDER: S-EPMC8010765 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundHealthcare professionals are required to access, interpret and generate patient data in the digital environment, and use this information to deliver and optimise patient care. Healthcare students are rarely exposed to the technology, or given the opportunity to use this during their training, which can impact on the digital competence of the graduating workforce. In this study we set out to develop and define domains of competence and associated learning outcomes needed by healthcare graduates to commence working in a digital healthcare environment.MethodA National Working Group was established in the UK to integrate Electronic Patient Records (EPRs) into undergraduate education for healthcare students studying medicine, pharmacy, nursing and midwifery. The working group, comprising 12 academic institutions and representatives from NHS England, NHS Digital and EPR system providers, met to discuss and document key learning outcomes required for using EPRs in the healthcare environment. Outcomes were grouped into six key domains and refined by the group prior to external review by experts working in medical education or with EPRs.ResultsSix key domains of competence and associated learning outcomes were identified and defined. External expert review provided iterative refinement and amendment. The agreed domains were: 1) Digital Health: work as a practitioner in the digital healthcare environment; 2) Accessing Data: access and interpret patient data to inform clinical decision-making; 3) Communication: communicate effectively with healthcare professionals and patients in the digital environment; 4) Generating data: generate data for and about patients within the EPR; 5) Multidisciplinary working: work with healthcare professionals with and alongside EPRs; and 6) Monitoring and audit: monitor and improve the quality and safety of healthcare.ConclusionThe six domains of competence and associated learning outcomes can be used by academics to guide the integration of EPRs into undergraduate healthcare programmes. This is key to ensuring that the future healthcare workforce can work with and alongside EPRs.
| S-EPMC6341543 | biostudies-literature
Project description:Clinically recorded pain scores are abundant in patient health records but are rarely used in research. The use of this information could help improve clinical outcomes. For example, a recent report by the Institute of Medicine stated that ineffective use of clinical information contributes to undertreatment of patient subpopulations--especially women. This study used diagnosis-associated pain scores from a large hospital database to document sex differences in reported pain. We used de-identified electronic medical records from Stanford Hospital and Clinics for more than 72,000 patients. Each record contained at least 1 disease-associated pain score. We found over 160,000 pain scores in more than 250 primary diagnoses, and analyzed differences in disease-specific pain reported by men and women. After filtering for diagnoses with minimum encounter numbers, we found diagnosis-specific sex differences in reported pain. The most significant differences occurred in patients with disorders of the musculoskeletal, circulatory, respiratory and digestive systems, followed by infectious diseases, and injury and poisoning. We also discovered sex-specific differences in pain intensity in previously unreported diseases, including disorders of the cervical region, and acute sinusitis (P = .01, .017, respectively). Pain scores were collected during hospital encounters. No information about the use of pre-encounter over-the-counter medications was available. To our knowledge, this is the largest data-driven study documenting sex differences of disease-associated pain. It highlights the utility of electronic medical record data to corroborate and expand on results of smaller clinical studies. Our findings emphasize the need for future research examining the mechanisms underlying differences in pain.This article highlights the potential of electronic medical records to conduct large-scale pain studies. Our results are consistent with previous studies reporting pain differences between sexes and also suggest that clinicians should pay increased attention to this idea.
| S-EPMC3293998 | biostudies-literature
Project description:BACKGROUND: Self-reported medical history data are frequently used in epidemiological studies. Self-reported diagnoses may differ from medical record diagnoses due to poor patient-clinician communication, self-diagnosis in the absence of a satisfactory explanation for symptoms, or the "health literacy" of the patient. METHODS: The US Department of Defense military health system offers a unique opportunity to evaluate electronic medical records with near complete ascertainment while on active duty. This study compared 38 self-reported medical conditions to electronic medical record data in a large population-based US military cohort. The objective of this study was to better understand challenges and strengths in self-reporting of medical conditions. RESULTS: Using positive and negative agreement statistics for less-prevalent conditions, near-perfect negative agreement and moderate positive agreement were found for the 38 diagnoses. CONCLUSION: This report highlights the challenges of using self-reported medical data and electronic medical records data, but illustrates that agreement between the two data sources increases with increased surveillance period of medical records. Self-reported medical data may be sufficient for ruling out history of a particular condition whereas prevalence studies may be best served by using an objective measure of medical conditions found in electronic healthcare records. Defining medical conditions from multiple sources in large, long-term prospective cohorts will reinforce the value of the study, particularly during the initial years when prevalence for many conditions may still be low.
| S-EPMC2447848 | biostudies-other
Project description:BACKGROUND:Electronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain. METHODS:To identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology. RESULTS:The medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters 'privacy', 'autonomy', 'risk/benefit', 'human relationships', and 'responsibility'. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved. CONCLUSIONS:While there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns.
| S-EPMC7446190 | biostudies-literature
Project description:BackgroundPatient access to electronic health records (EHRs) is associated with increased patient engagement and health care quality outcomes. However, the adoption of patient portals and personal health records (PHRs) that facilitate this access is impeded by barriers. The Clinical Adoption Framework (CAF) has been developed to analyze EHR adoption, but this framework does not consider the patient as an end-user.ObjectiveWe aim to extend the scope of the CAF to patient access to EHRs, develop guidance documentation for the application of the CAF, and assess the interrater reliability.MethodsWe systematically reviewed existing systematic reviews on patients' access to EHRs and PHRs. Results of each review were mapped to one of the 43 CAF categories. Categories were iteratively adapted when needed. We measured the interrater reliability with Cohen's unweighted kappa and statistics regarding the agreement among reviewers on mapping quotes of the reviews to different CAF categories.ResultsWe further defined the framework's inclusion and exclusion criteria for 33 of the 43 CAF categories and achieved a moderate agreement among the raters, which varied between categories.ConclusionsIn the reviews, categories about people, organization, system quality, system use, and the net benefits of system use were addressed more often than those about international and regional information and communication technology infrastructures, standards, politics, incentive programs, and social trends. Categories that were addressed less might have been underdefined in this study. The guidance documentation we developed can be applied to systematic literature reviews and implementation studies, patient and informal caregiver access to EHRs, and the adoption of PHRs.
| S-EPMC7154932 | biostudies-literature
Project description:electronic Medical Records & Genomics (eMERGE)
| PRJNA158491 | ENA
Project description: Not available
| S-EPMC8871105 | biostudies-literature
Project description:By November 2015, the West Africa Ebola epidemic had caused 28598 infections and 11299 deaths in the three countries most affected. The outbreak required rapid innovation and adaptation. Médecins sans Frontières (MSF) scaled up its usual 20-30 bed Ebola management centres (EMCs) to 100-300 beds with over 300 workers in some settings. This brought challenges in patient and clinical data management resulting from the difficulties of working safely with high numbers of Ebola patients. We describe a project MSF established with software developers and the Google Social Impact Team to develop context-adapted tools to address the challenges of recording Ebola clinical information. We share the outcomes and key lessons learned in innovating rapidly under pressure in difficult environmental conditions. Information on adoption, maintenance, and data quality was gathered through review of project documentation, discussions with field staff and key project stakeholders, and analysis of tablet data. In March 2015, a full prototype was deployed in Magburaka EMC, Sierra Leone. Inpatient data were captured on 204 clinical interactions with 34 patients from 5 March until 10 April 2015. Data continued to also be recorded on paper charts, creating theoretically identical record "pairs" on paper and tablet. 83 record pairs for 33 patients with 22 data items (temperature and symptoms) per pair were analysed. The overall Kappa coefficient for agreement between sources was 0.62, but reduced to 0.59 when rare bleeding symptoms were excluded, indicating moderate to good agreement. The time taken to deliver the product was more than that anticipated by MSF (7 months versus 6 weeks). Deployment of the tablet coincided with a dramatic drop in patient numbers and thus had little impact on patient care. We have identified lessons specific to humanitarian-technology collaborative projects and propose a framework for emergency humanitarian innovation. Time and effort is required to bridge differences in organisational culture between the technology and humanitarian worlds. This investment is essential for establishing a shared vision on deliverables, urgency, and ownership of product.
| S-EPMC5357025 | biostudies-literature
Project description:BackgroundAs the use of electronic health records (EHRs) becomes more widespread, so does the need to search and provide effective information discovery within them. Querying by keyword has emerged as one of the most effective paradigms for searching. Most work in this area is based on traditional Information Retrieval (IR) techniques, where each document is compared individually against the query. We compare the effectiveness of two fundamentally different techniques for keyword search of EHRs.MethodsWe built two ranking systems. The traditional BM25 system exploits the EHRs' content without regard to association among entities within. The Clinical ObjectRank (CO) system exploits the entities' associations in EHRs using an authority-flow algorithm to discover the most relevant entities. BM25 and CO were deployed on an EHR dataset of the cardiovascular division of Miami Children's Hospital. Using sequences of keywords as queries, sensitivity and specificity were measured by two physicians for a set of 11 queries related to congenital cardiac disease.ResultsOur pilot evaluation showed that CO outperforms BM25 in terms of sensitivity (65% vs. 38%) by 71% on average, while maintaining the specificity (64% vs. 61%). The evaluation was done by two physicians.ConclusionsAuthority-flow techniques can greatly improve the detection of relevant information in EHRs and hence deserve further study.
| S-EPMC2984470 | biostudies-literature
Project description:BackgroundAs the availability of interoperable electronic health records (iEHRs) or health information exchanges (HIEs) continues to increase, there is greater need and opportunity to assess the current evidence base on what works and what does not regarding the adoption, use, and impact of iEHRs.ObjectiveThe purpose of this project is to assess the international evidence base on the adoption, use, and impact of iEHRs.MethodsWe conducted a systematic review, searching multiple databases-MEDLINE, Embase, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL)-with supplemental searches conducted in Google Scholar and grey literature sources (ie, Google, Grey Literature Report, and OpenGrey). All searches were conducted in January and February 2017. Articles were eligible for inclusion if they were published in English, were published from 2006 to 2017, and were either an original research study or a literature review. In order to be included, articles needed to focus on iEHRs and HIEs across multiple health care settings, as well as on the impact and effectiveness of iEHR adoption and use.ResultsWe included 130 articles in the synthesis (113 primary studies, 86.9%; 17 reviews, 13.1%), with the majority focused on the United States (88/130, 67.7%). The primary studies focused on a wide range of health care settings; the three most prevalent settings studied included acute care (59/113, 52.2%), primary care (44/113, 38.9%), and emergency departments (34/113, 30.1%). We identified 29 distinct measurement items in the 113 primary studies that were linked to 522 specific measurement outcomes. Productivity and quality were the two evaluation dimensions that received the most attention, accounting for 14 of 29 (48%) measurement items and 306 of 522 (58.6%) measurement outcomes identified. Overall, the majority of the 522 measurement outcomes were positive (298/522, 57.1%). We also identified 17 reviews on iEHR use and impact, 6 (35%) that focused on barriers and facilitators to adoption and implementation and 11 (65%) that focused on benefits and impacts, with the more recent reviews finding little generalizable evidence of benefit and impact.ConclusionsThis review captures the status of an evolving and active field focused on the use and impact of iEHRs. While the overall findings suggest many positive impacts, the quality of the primary studies were not evaluated systematically. When broken down by specific measurement item, the results directed attention both to measurement outcomes that were consistently positive and others that were mostly negative or equivocal.
| S-EPMC6592487 | biostudies-literature