Are all cancer survivors included when using electronically administered patient reported outcomes in primary healthcare cancer rehabilitation? A cross-sectional study.

BACKGROUND: Patient reported outcomes (PROs) are being used frequently in clinical practice. PROs often serve several purposes, such as increasing patient involvement, assessing health status, and monitoring and improving the quality-of-care at an aggregated level. However, the lack of representative PRO-data may have implications for all these purposes. This study aims to assess the association of non-administration of (not sending an electronic invite to PRO) and non-response to (not responding to PRO) electronically administered PROs with social inequality in a primary healthcare cancer rehabilitation setting. Furthermore, it examines whether the workflows surrounding PRO have an impact on non-administration and non-response. METHODS: This is a cross sectional study using routinely collected data from electronic health records and registers including cancer survivors (CSs) over 18 years booked for an initial consultation in a primary healthcare cancer rehabilitation setting using PROs for systematic health status assessment. During the study period two different PRO platforms were used, each associated with different workflows. Non-administration and non-response rates were calculated for sociodemographic characteristics for each PRO platform. Crude and adjusted odds ratios were calculated using univariate and multivariate logistic regression. RESULTS: In total, 1868 (platform 1) and 1446 (platform 2) CSCSs were booked for an initial consultation. Of these, 233 (12.5%) (platform 1) and 283 (19.6%) (platform 2) were not sent a PRO (non-administration). Among those who received a PRO, 157 (9.6%) on platform 1 and 140 (12.0%) on platform 2 did not respond (non-response). Non-administration of and non-response to PROs were significantly associated with lower socioeconomic status. Moreover, the workflows surrounding PROs seem to have an impact on non-inclusion in and non-response to PROs. CONCLUSIONS: Non-administration of and non-response to PROs in clinical practice is associated with determinants of social inequality. Clinical workflows and the PRO platforms used may potentially worsen this inequality. It is important to consider these implications when using PROs at both the individual and aggregated levels. A key aspect of implementing PROs in clinical practice is the ongoing focus on representativeness, including a focus on monitoring PRO administration and response.

Factors Influencing Data Quality in Electronic Health Record Systems in 50 Health Facilities in Rwanda and the Role of Clinical Alerts: Cross-Sectional Observational Study.

BACKGROUND: Electronic health records (EHRs) play an increasingly important role in delivering HIV care in low- and middle-income countries. The data collected are used for direct clinical care, quality improvement, program monitoring, public health interventions, and research. Despite widespread EHR use for HIV care in African countries, challenges remain, especially in collecting high-quality data. OBJECTIVE: We aimed to assess data completeness, accuracy, and timeliness compared to paper-based records, and factors influencing data quality in a large-scale EHR deployment in Rwanda. METHODS: We randomly selected 50 health facilities (HFs) using OpenMRS, an EHR system that supports HIV care in Rwanda, and performed a data quality evaluation. All HFs were part of a larger randomized controlled trial, with 25 HFs receiving an enhanced EHR with clinical decision support systems. Trained data collectors visited the 50 HFs to collect 28 variables from the paper charts and the EHR system using the Open Data Kit app. We measured data completeness, timeliness, and the degree of matching of the data in paper and EHR records, and calculated concordance scores. Factors potentially affecting data quality were drawn from a previous survey of users in the 50 HFs. RESULTS: We randomly selected 3467 patient records, reviewing both paper and EHR copies (194,152 total data items). Data completeness was >85% threshold for all data elements except viral load (VL) results, second-line, and third-line drug regimens. Matching scores for data values were close to or >85% threshold, except for dates, particularly for drug pickups and VL. The mean data concordance was 10.2 (SD 1.28) for 15 (68%) variables. HF and user factors (eg, years of EHR use, technology experience, EHR availability and uptime, and intervention status) were tested for correlation with data quality measures. EHR system availability and uptime was positively correlated with concordance, whereas users' experience with technology was negatively correlated with concordance. The alerts for missing VL results implemented at 11 intervention HFs showed clear evidence of improving timeliness and completeness of initially low matching of VL results in the EHRs and paper records (11.9%-26.7%; P<.001). Similar effects were seen on the completeness of the recording of medication pickups (18.7%-32.6%; P<.001). CONCLUSIONS: The EHR records in the 50 HFs generally had high levels of completeness except for VL results. Matching results were close to or >85% threshold for nondate variables. Higher EHR stability and uptime, and alerts for entering VL both strongly improved data quality. Most data were considered fit for purpose, but more regular data quality assessments, training, and technical improvements in EHR forms, data reports, and alerts are recommended. The application of quality improvement techniques described in this study should benefit a wide range of HFs and data uses for clinical care, public health, and disease surveillance.

Experiences from patients in mental healthcare accessing their electronic health records: results from a cross-national survey in Estonia, Finland, Norway, and Sweden.

BACKGROUND: Patients' online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users' overall experiences with national PAEHR services. METHODS: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users' experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. RESULTS: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information. CONCLUSIONS: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences.

Automating incidence and prevalence analysis in open cohorts.

MOTIVATION: Data is increasingly used for improvement and research in public health, especially administrative data such as that collected in electronic health records. Patients enter and exit these typically open-cohort datasets non-uniformly; this can render simple questions about incidence and prevalence time-consuming and with unnecessary variation between analyses. We therefore developed methods to automate analysis of incidence and prevalence in open cohort datasets, to improve transparency, productivity and reproducibility of analyses. IMPLEMENTATION: We provide both a code-free set of rules for incidence and prevalence that can be applied to any open cohort, and a python Command Line Interface implementation of these rules requiring python 3.9 or later. GENERAL FEATURES: The Command Line Interface is used to calculate incidence and point prevalence time series from open cohort data. The ruleset can be used in developing other implementations or can be rearranged to form other analytical questions such as period prevalence. AVAILABILITY: The command line interface is freely available from https://github.com/THINKINGGroup/analogy_publication .

Nursing workload: use of artificial intelligence to develop a classifier model.

OBJECTIVE: to describe the development of a predictive nursing workload classifier model, using artificial intelligence. METHOD: retrospective observational study, using secondary sources of electronic patient records, using machine learning. The convenience sample consisted of 43,871 assessments carried out by clinical nurses using the Perroca Patient Classification System, which served as the gold standard, and clinical data from the electronic medical records of 11,774 patients, which constituted the variables. In order to organize the data and carry out the analysis, the Dataiku® data science platform was used. Data analysis occurred in an exploratory, descriptive and predictive manner. The study was approved by the Ethics and Research Committee of the institution where the study was carried out. RESULTS: the use of artificial intelligence enabled the development of the nursing workload assessment classifier model, identifying the variables that most contributed to its prediction. The algorithm correctly classified 72% of the variables and the area under the Receiver Operating Characteristic curve was 82%. CONCLUSION: a predictive model was developed, demonstrating that it is possible to train algorithms with data from the patient's electronic medical record to predict the nursing workload and that artificial intelligence tools can be effective in automating this activity.

Prognostic model of in-hospital ischemic stroke mortality based on an electronic health record cohort in Indonesia.

Stroke patients rarely have satisfactory survival, which worsens further if comorbidities develop in such patients. Limited data availability from Southeast Asian countries, especially Indonesia, has impeded the disentanglement of post-stroke mortality determinants. This study aimed to investigate predictors of in-hospital mortality in patients with ischemic stroke (IS). This retrospective observational study used IS medical records from the National Brain Centre Hospital, Jakarta, Indonesia. A theoretically driven Cox's regression and Fine-Gray models were established by controlling for age and sex to calculate the hazard ratio of each plausible risk factor for predicting in-hospital stroke mortality and addressing competing risks if they existed. This study finally included 3,278 patients with IS, 917 (28%) of whom had cardiovascular disease and 376 (11.5%) suffered renal disease. Bivariate exploratory analysis revealed lower blood levels of triglycerides, low density lipoprotein, and total cholesterol associated with in-hospital-stroke mortality. The average age of patients with post-stroke mortality was 64.06 ± 11.32 years, with a mean body mass index (BMI) of 23.77 kg/m2 and a median Glasgow Coma Scale (GCS) score of 12 and an IQR of 5. Cardiovascular disease was significantly associated with IS mortality risk. NIHSS score at admission (hazard ratio [HR] = 1.04; 95% confidence interval [CI]: 1.00-1.07), male sex (HR = 1.51[1.01-2.26] and uric acid level (HR = 1.02 [1.00-1.03]) predicted survivability. Comorbidities, such as cardiovascular disease (HR = 2.16 [1.37-3.40], pneumonia (HR = 2.43 [1.42-4.15] and sepsis (HR = 2.07 [1.09-3.94, had higher hazards for post-stroke mortality. Contrarily, the factors contributing to a lower hazard of mortality were BMI (HR = 0.94 [0.89-0.99]) and GCS (HReye = 0.66 [0.48-0.89]. In summary, our study reported that male sex, NIHSS, uric acid level, cardiovascular diseases, pneumonia, sepsis. BMI, and GCS on admission were strong determinants of in-hospital mortality in patients with IS.

Preparing to Address Social Determinants of Health (SDOH): Approaches to Clinic Transformation.

CONTEXT: Pennsylvanians' health is influenced by numerous social determinants of health (SDOH). Integrating SDOH data into electronic health records (EHRs) is critical to identifying health disparities, informing public health policies, and devising interventions. Nevertheless, challenges remain in its implementation within clinical settings. In 2018, the Pennsylvania Department of Health (PADOH) received the Centers for Disease Control and Prevention's DP18-1815 "Improving the Health of Americans Through Prevention and Management of Diabetes and Heart Disease and Stroke" grant to strengthen SDOH data integration in Pennsylvania practices. IMPLEMENTATION: Quality Insights was contracted by PADOH to provide training tailored to each practice's readiness, an International Classification of Diseases, Tenth Revision (ICD-10) guide for SDOH, Continuing Medical Education on SDOH topics, and introduced the PRAPARE toolkit to streamline SDOH data integration and address disparities. Dissemination efforts included a podcast highlighting success stories and lessons learned from practices. From 2019 to 2022, Quality Insights and the University of Pittsburgh Evaluation Institute for Public Health (Pitt evaluation team) executed a mixed-methods evaluation. FINDINGS: During 2019-2022, Quality Insights supported 100 Pennsylvania practices in integrating SDOH data into EHR systems. Before COVID-19, 82.8% actively collected SDOH data, predominantly using PRAPARE tool (62.7%) and SDOH ICD-10 codes (80.4%). Amidst COVID-19, these statistics shifted to 65.1%, 45.2%, and 42.7%, respectively. Notably, the pandemic highlighted the importance of SDOH assessment and catalyzed some practices' utilization of SDOH data. Progress was evident among practices, with additional contribution to other DP18-1815 objectives. The main challenge was the variable understanding, utilization, and capability of handling SDOH data across practices. Effective strategies involved adaptable EHR systems, persistent efforts by Quality Insights, and the presence of change champions within practices. DISCUSSION: The COVID-19 pandemic strained staffing in many practices, impeding SDOH data integration into EHRs. Addressing the diverse understanding and use of SDOH data requires standardized training and procedures. Customized support and sustained engagement by facilitating organizations are paramount in ensuring practices' efficient SDOH data collection and integration.

Practice Facilitation and Clinical Performance Feedback Using the Electronic Health Record Improved Blood Pressure and Cholesterol Management in Small Primary Care Practices in New York City.

Cardiovascular disease (CVD) disproportionately affects people of color and those with lower household income. Improving blood pressure (BP) and cholesterol management for those with or at risk for CVD can improve health outcomes. The New York City Department of Health implemented clinical performance feedback with practice facilitation (PF) in 134 small primary care practices serving on average over 84% persons of color. Facilitators reviewed BP and cholesterol management data on performance dashboards and guided practices to identify and outreach to patients with suboptimal BP and cholesterol management. Despite disruptions from the COVID-19 pandemic, practices demonstrated significant improvements in BP (68%-75%, P < .001) and cholesterol management (72%-78%, P = .01). Prioritizing high-need neighborhoods for impactful resource investment, such as PF and data sharing, may be a promising approach to reducing CVD and hypertension inequities in areas heavily impacted by structural racism.

Variation in clinical presentation of pediatric-onset and adult-onset atopic dermatitis: a retrospective, single-center, chart review of adults with atopic dermatitis from the United States.

Atopic dermatitis (AD) is a chronic skin condition that can manifest in childhood and persist into adulthood or can present de novo in adults. The clinical presentation of adults with AD may differ among those with pediatric-onset versus adult-onset disease and potential differences between both groups remain to be better characterized. These atypical features might not be encompassed as part of current diagnostic criteria for AD, such as the Hanifin-Rajka (H-R) and the U.K. Working Party (UKWP) criteria. We conducted a retrospective chart review of the electronic medical records of a large, single, academic center to compare the clinical characteristics between adult-onset and pediatric onset AD and examine the proportion of patients who meet the H-R and/or UKWP criteria. Our single-center retrospective chart review included adults (≥ 18 years of age) with any AD-related ICD-10 codes, ≥ 2 AD-related visits, and a recorded physician-confirmed AD diagnosis. Descriptive statistics were used to compare adults with pediatric-onset (< 18 years of age) and adult-onset (≥ 18 years of age) AD. Logistic regression and x2 test were used to compare groups. We found that, compared to pediatric-onset AD, adults with adult-onset AD had less flexural involvement, flexural lichenification and a personal and family history of other atopic diseases. Compared to adults with pediatric-onset AD, adults with adult-onset AD had greater involvement of the extensor surfaces and more nummular eczema compared to pediatric-onset AD. In our cohort, adults with adult-onset AD were less likely to meet H-R and UKWP criteria compared to pediatric-onset AD. Adults with adult-onset AD may present with a clinical presentation that is different from those with pediatric-onset AD, which may not be completely captured by current AD criteria such as the H-R and UWKP criteria. This can lead to possibly mis- or underdiagnosing AD in adults. Thus, understanding the differences and working towards modifying criteria for adult-onset AD has the potential to improve accurate diagnosis of adults with AD.

Doubly robust estimation and sensitivity analysis for marginal structural quantile models.

The marginal structure quantile model (MSQM) provides a unique lens to understand the causal effect of a time-varying treatment on the full distribution of potential outcomes. Under the semiparametric framework, we derive the efficiency influence function for the MSQM, from which a new doubly robust estimator is proposed for point estimation and inference. We show that the doubly robust estimator is consistent if either of the models associated with treatment assignment or the potential outcome distributions is correctly specified, and is semiparametric efficient if both models are correct. To implement the doubly robust MSQM estimator, we propose to solve a smoothed estimating equation to facilitate efficient computation of the point and variance estimates. In addition, we develop a confounding function approach to investigate the sensitivity of several MSQM estimators when the sequential ignorability assumption is violated. Extensive simulations are conducted to examine the finite-sample performance characteristics of the proposed methods. We apply the proposed methods to the Yale New Haven Health System Electronic Health Record data to study the effect of antihypertensive medications to patients with severe hypertension and assess the robustness of the findings to unmeasured baseline and time-varying confounding.

Development of a Longitudinal Prostate Cancer Transcriptomic and Clinical Data Linkage.

Importance: Although tissue-based gene expression testing has become widely used for prostate cancer risk stratification, its prognostic performance in the setting of clinical care is not well understood. Objective: To develop a linkage between a prostate genomic classifier (GC) and clinical data across payers and sites of care in the US. Design, Setting, and Participants: In this cohort study, clinical and transcriptomic data from clinical use of a prostate GC between 2016 and 2022 were linked with data aggregated from insurance claims, pharmacy records, and electronic health record (EHR) data. Participants were anonymously linked between datasets by deterministic methods through a deidentification engine using encrypted tokens. Algorithms were developed and refined for identifying prostate cancer diagnoses, treatment timing, and clinical outcomes using diagnosis codes, Common Procedural Terminology codes, pharmacy codes, Systematized Medical Nomenclature for Medicine clinical terms, and unstructured text in the EHR. Data analysis was performed from January 2023 to January 2024. Exposure: Diagnosis of prostate cancer. Main Outcomes and Measures: The primary outcomes were biochemical recurrence and development of prostate cancer metastases after diagnosis or radical prostatectomy (RP). The sensitivity of the linkage and identification algorithms for clinical and administrative data were calculated relative to clinical and pathological information obtained during the GC testing process as the reference standard. Results: A total of 92 976 of 95 578 (97.2%) participants who underwent prostate GC testing were successfully linked to administrative and clinical data, including 53 871 who underwent biopsy testing and 39 105 who underwent RP testing. The median (IQR) age at GC testing was 66.4 (61.0-71.0) years. The sensitivity of the EHR linkage data for prostate cancer diagnoses was 85.0% (95% CI, 84.7%-85.2%), including 80.8% (95% CI, 80.4%-81.1%) for biopsy-tested participants and 90.8% (95% CI, 90.5%-91.0%) for RP-tested participants. Year of treatment was concordant in 97.9% (95% CI, 97.7%-98.1%) of those undergoing GC testing at RP, and 86.0% (95% CI, 85.6%-86.4%) among participants undergoing biopsy testing. The sensitivity of the linkage was 48.6% (95% CI, 48.1%-49.1%) for identifying RP and 50.1% (95% CI, 49.7%-50.5%) for identifying prostate biopsy. Conclusions and Relevance: This study established a national-scale linkage of transcriptomic and longitudinal clinical data yielding high accuracy for identifying key clinical junctures, including diagnosis, treatment, and early cancer outcome. This resource can be leveraged to enhance understandings of disease biology, patterns of care, and treatment effectiveness.

Characteristics of Korean medical care utilization in patients with traffic injury: Analysis of 3 hospital electronic health record databases.

This retrospective study aimed to identify the characteristics of Korean medical care utilization in patients with traffic injury (TI) and to explore the clinical effectiveness of Korean medical interventions for TI through a multicenter chart review. This multicenter, retrospective registry study gathered electronic health records from 3 hospitals between January 1, 2018 and December 31, 2021. Data included treatment dates, demographic information, the Korean Standard Classification of Diseases codes, collision data, Korean medicine treatment modalities, and treatment outcomes. In total, 384 patients (182 inpatients and 202 outpatients) were included in the analysis. Patients were categorized into acute (207 patients, 53.9%), subacute (77 patients, 20.1%), and chronic (100 patients, 26.0%) phases based on the period until the visit. The most frequent Korean Standard Classification of Diseases code was "sprain and strain of cervical spine (S13.4)." All patients, except one, received Korean physiotherapy, followed by acupuncture and cupping. Comparative intragroup analysis revealed significant pain reduction in patients treated with the combination of Chuna manual therapy, herbal medicine, and pharmacopuncture and those treated with pharmacopuncture and herbal medicine only. This study highlights the characteristics of patients with TI visiting medical institutions providing Korean medicine and describes the effectiveness of Korean medicine interventions. Further comprehensive analysis with more data is necessary for future research.

Using electronic health records for clinical pharmacology research: Challenges and considerations.

Electronic health records (EHRs) contain a vast array of phenotypic data on large numbers of individuals, often collected over decades. Due to the wealth of information, EHR data have emerged as a powerful resource to make first discoveries and identify disparities in our healthcare system. While the number of EHR-based studies has exploded in recent years, most of these studies are directed at associations with disease rather than pharmacotherapeutic outcomes, such as drug response or adverse drug reactions. This is largely due to challenges specific to deriving drug-related phenotypes from the EHR. There is great potential for EHR-based discovery in clinical pharmacology research, and there is a critical need to address specific challenges related to accurate and reproducible derivation of drug-related phenotypes from the EHR. This review provides a detailed evaluation of challenges and considerations for deriving drug-related data from EHRs. We provide an examination of EHR-based computable phenotypes and discuss cutting-edge approaches to map medication information for clinical pharmacology research, including medication-based computable phenotypes and natural language processing. We also discuss additional considerations such as data structure, heterogeneity and missing data, rare phenotypes, and diversity within the EHR. By further understanding the complexities associated with conducting clinical pharmacology research using EHR-based data, investigators will be better equipped to design thoughtful studies with more reproducible results. Progress in utilizing EHRs for clinical pharmacology research should lead to significant advances in our ability to understand differential drug response and predict adverse drug reactions.

Characteristics of Older Adults with Alzheimer's Disease Who Were Hospitalized during the COVID-19 Pandemic: A Secondary Data Analysis.

We aim to investigate the relationships between the population characteristics of patients with Alzheimer's Disease (AD) and their Healthcare Utilization (HU) during the COVID-19 pandemic. Electronic health records (EHRs) were utilized. The study sample comprised those with ICD-10 codes G30.0, G30.1, G30.8, and G30.9 between 1 January 2020 and 31 December 2021. Pearson's correlation and multiple regression were used. The analysis utilized 1537 patient records with an average age of 82.20 years (SD = 7.71); 62.3% were female. Patients had an average of 1.64 hospitalizations (SD = 1.18) with an average length of stay (ALOS) of 7.45 days (SD = 9.13). Discharge dispositions were primarily home (55.1%) and nursing facilities (32.4%). Among patients with multiple hospitalizations, a negative correlation was observed between age and both ALOS (r = -0.1264, p = 0.0030) and number of hospitalizations (r = -0.1499, p = 0.0004). Predictors of longer ALOS included male gender (p = 0.0227), divorced or widowed (p = 0.0056), and the use of Medicare Advantage and other private insurance (p = 0.0178). Male gender (p = 0.0050) and Black race (p = 0.0069) were associated with a higher hospitalization frequency. We recommend future studies including the co-morbidities of AD patients, larger samples, and longitudinal data.

10-year multimorbidity patterns among people with and without rheumatic and musculoskeletal diseases: an observational cohort study using linked electronic health records from Wales, UK.

OBJECTIVES: To compare the patterns of multimorbidity between people with and without rheumatic and musculoskeletal diseases (RMDs) and to describe how these patterns change by age and sex over time, between 2010 and 2019. PARTICIPANTS: 103 426 people with RMDs and 2.9 million comparators registered in 395 Wales general practices (GPs). Each patient with an RMD aged 0-100 years between January 2010 and December 2019 registered in Clinical Practice Research Welsh practices was matched with up to five comparators without an RMD, based on age, gender and GP code. PRIMARY OUTCOME MEASURES: The prevalence of 29 Elixhauser-defined comorbidities in people with RMDs and comparators categorised by age, gender and GP practices. Conditional logistic regression models were fitted to calculate differences (OR, 95% CI) in associations with comorbidities between cohorts. RESULTS: The most prevalent comorbidities were cardiovascular risk factors, hypertension and diabetes. Having an RMD diagnosis was associated with a significantly higher odds for many conditions including deficiency anaemia (OR 1.39, 95% CI (1.32 to 1.46)), hypothyroidism (OR 1.34, 95% CI (1.19 to 1.50)), pulmonary circulation disorders (OR 1.39, 95% CI 1.12 to 1.73) diabetes (OR 1.17, 95% CI (1.11 to 1.23)) and fluid and electrolyte disorders (OR 1.27, 95% CI (1.17 to 1.38)). RMDs have a higher proportion of multimorbidity (two or more conditions in addition to the RMD) compared with non-RMD group (81% and 73%, respectively in 2019) and the mean number of comorbidities was higher in women from the age of 25 and 50 in men than in non-RMDs group. CONCLUSION: People with RMDs are approximately 1.5 times as likely to have multimorbidity as the general population and provide a high-risk group for targeted intervention studies. The individuals with RMDs experience a greater load of coexisting health conditions, which tend to manifest at earlier ages. This phenomenon is particularly pronounced among women. Additionally, there is an under-reporting of comorbidities in individuals with RMDs.

Improving quality of care by standardising patient data collection in electronic medical records in an oncology department in Spain.

BACKGROUND: Evaluation of quality of care in oncology is key in ensuring patients receive adequate treatment. American Society of Clinical Oncology's (ASCO) Quality Oncology Practice Initiative (QOPI) Certification Program (QCP) is an international initiative that evaluates quality of care in outpatient oncology practices. METHODS: We retrospectively reviewed free-text electronic medical records from patients with breast cancer (BR), colorectal cancer (CRC) or non-small cell lung cancer (NSCLC). In a baseline measurement, high scores were obtained for the nine disease-specific measures of QCP Track (2021 version had 26 measures); thus, they were not further analysed. We evaluated two sets of measures: the remaining 17 QCP Track measures, as well as these plus other 17 measures selected by us (combined measures). Review of data from 58 patients (26 BR; 18 CRC; 14 NSCLC) seen in June 2021 revealed low overall quality scores (OQS)-below ASCO's 75% threshold-for QCP Track measures (46%) and combined measures (58%). We developed a plan to improve OQS and monitored the impact of the intervention by abstracting data at subsequent time points. RESULTS: We evaluated potential causes for the low OQS and developed a plan to improve it over time by educating oncologists at our hospital on the importance of improving collection of measures and highlighting the goal of applying for QOPI certification. We conducted seven plan-do-study-act cycles and evaluated the scores at seven subsequent data abstraction time points from November 2021 to December 2022, reviewing 404 patients (199 BR; 114 CRC; 91 NSCLC). All measures were improved. Four months after the intervention, OQS surpassed the quality threshold and was maintained for 10 months until the end of the study (range, 78-87% for QCP Track measures; 78-86% for combined measures). CONCLUSIONS: We developed an easy-to-implement intervention that achieved a fast improvement in OQS, enabling our Medical Oncology Department to aim for QOPI certification.

Return to Work After Breast Cancer Treatment: An Electronic Health Record-based Study in North Norway.

BACKGROUND/AIM: Breast cancer treatment may interfere with work ability. Previous return-to-work studies have often focused on participants who were invited to participate after treatment completion. Participation varied, resulting in potential selection bias. This is a health-record-based study evaluating data completeness, both at baseline and one year after diagnosis. Correlations between baseline variables and return to work were also analyzed. PATIENTS AND METHODS: This is a retrospective review of 150 relapse-free survivors treated in Nordland county between 2019 and 2022 (all-comers managed with different types of systemic treatment and surgery). Work status was assessed in the regional electronic patient record (EPR). A 65-years age cut-off was employed to define two subgroups. RESULTS: At diagnosis, occupational status was assessable in all 150 patients. Almost all patients older than 65 years of age were retired (79%) or on disability pension for previously diagnosed conditions (19%). Data completeness one year after diagnosis was imperfect, because the EPR did not contain required information in 19 survivors. The majority of those ≤65 years of age at diagnosis returned to work. Only 14 of 88 patients (16%) did not return to work. Postoperative nodal stage was the only significant predictive factor. Those with pN1-3 had a lower return rate (68%) than their counterparts with lower nodal stage. CONCLUSION: This pilot study highlights the utility and limitations of EPR-based research in a rural Norwegian setting, emphasizing the need for comprehensive, individualized interventions to support breast cancer survivors in returning to work. The findings underscore the importance of considering diverse sociodemographic and clinical factors, as well as the potential benefits of long-term, population-based studies to address these complex challenges.

Learning debiased graph representations from the OMOP common data model for synthetic data generation.

BACKGROUND: Generating synthetic patient data is crucial for medical research, but common approaches build up on black-box models which do not allow for expert verification or intervention. We propose a highly available method which enables synthetic data generation from real patient records in a privacy preserving and compliant fashion, is interpretable and allows for expert intervention. METHODS: Our approach ties together two established tools in medical informatics, namely OMOP as a data standard for electronic health records and Synthea as a data synthetization method. For this study, data pipelines were built which extract data from OMOP, convert them into time series format, learn temporal rules by 2 statistical algorithms (Markov chain, TARM) and 3 algorithms of causal discovery (DYNOTEARS, J-PCMCI+, LiNGAM) and map the outputs into Synthea graphs. The graphs are evaluated quantitatively by their individual and relative complexity and qualitatively by medical experts. RESULTS: The algorithms were found to learn qualitatively and quantitatively different graph representations. Whereas the Markov chain results in extremely large graphs, TARM, DYNOTEARS, and J-PCMCI+ were found to reduce the data dimension during learning. The MultiGroupDirect LiNGAM algorithm was found to not be applicable to the problem statement at hand. CONCLUSION: Only TARM and DYNOTEARS are practical algorithms for real-world data in this use case. As causal discovery is a method to debias purely statistical relationships, the gradient-based causal discovery algorithm DYNOTEARS was found to be most suitable.

Predicting Glaucoma Surgical Outcomes Using Neural Networks and Machine Learning on Electronic Health Records.

Purpose: To develop machine learning (ML) and deep learning (DL) models to predict glaucoma surgical outcomes, including postoperative intraocular pressure, use of ocular antihypertensive medications, and need for repeat surgery. Methods: We identified glaucoma surgeries performed at Stanford from 2013-2024, with two or more postoperative visits with intraocular pressure (IOP) measurement. Patient features were identified from the electronic health record (EHR), including demographics, prior diagnosis and procedure codes, medications and eye exam findings. Classical ML and DL models were developed to predict which glaucoma surgeries would result in surgical failure, defined as (1) IOP not reduced by more than 20% of preoperative baseline on two consecutive postoperative visits, (2) increased classes of glaucoma medications, and (3) need for additional glaucoma surgery or revision of original surgery. Results: A total of 2398 glaucoma surgeries of 1571 patients were included, of which 1677 surgeries met failure criteria. Random forest performed best for prediction of overall surgical failure, with accuracy of 75.5% and area under the receiver operator curve (AUROC) of 76.7%, similar to the deep learning model (accuracy 75.5%, AUROC 76.6%). Across all models, prediction performance was better for IOP outcomes (AUROC 86%) than need for an additional surgery (AUROC 76%) or need for additional glaucoma medication (AUC 70%). Conclusions: ML and DL algorithms can predict glaucoma surgery outcomes using structured data inputs from EHRs. Translational Relevance: Models that predict outcomes of glaucoma surgery may one day provide the basis for clinical decision support tools supporting surgeons in personalizing glaucoma treatment plans.