How to Assess FAIRness of Your Data - A Summary of Testing Two FAIR Validators.

Decision-making in healthcare is heavily reliant on data that is findable, accessible, interoperable and reusable (FAIR). Evolving advancements in genomics also heavily rely on FAIR data to steer reliable research for the future. For practical purposes, ensuring FAIRness of a clinical data set can be challenging but could be aided by using FAIR validators. The study describes the test of two open-access web-tools in their demo versions to determine the FAIR levels of three submitted genomic data files with different formats (JSON, TXT, CSV). The F-UJI tool and FAIR-Checker tools provided similar FAIR scores for the three submitted files. However, the F-UJI tool assigned a total rating whereas the FAIR-Checker gave scores clustered by FAIR principles. Neither tool was suited to determine FAIR levels of a FHIR® JSON metadata file. Despite their early developmental status, FAIR validator tools have great potential to assist clinicians in the FAIRification of their research data.

Insights into the FAIRness of the German Network University Medicine: A Survey.

The need to harness large amounts of data, possibly within a short period of time, became apparent during the Covid-19 pandemic outbreak. In 2022, the Corona Data Exchange Platform (CODEX), which had been developed within the German Network University Medicine (NUM), was extended by a number of common components, including a section on FAIR science. The FAIR principles enable research networks to evaluate how well they comply with current standards in open and reproducible science. To be more transparent, but also to guide scientists on how to improve data and software reusability, we disseminated an online survey within the NUM. Here we present the outcomes and lessons learnt.

Digitalization of Health Data: Interoperability of the Proposed European Health Data Space.

On May 3rd, 2022, the European Commission published its legislative proposal to create a European Health Data Space (EHDS) enabling citizens of the European Union to gain secure access to their electronic health data by establishing a market for digital health. This market will feature the primary and secondary use of electronic health records by digital products and services. The articles of the proposal address many aspects of ensuring health data interoperability. That includes the creation of a European Electronic Health Record Exchange Format for defined data categories including patient summaries and electronic prescriptions, the development of a central platform to provide a cross-border digital infrastructure and that each Member State institutes a digital health authority and a national point of contact. In addition, the Commission will define common specifications that electronic health record systems and medical devices will have to meet as interoperability requirements. In its current form, the proposal does not stipulate specific standards that need to be universally adopted to ensure semantic and syntactical interoperability. Considering that many datasets are not internationally harmonized and lack standardization, these specifications will need to be provided for example by existing standards like the International Patient Summary.

Motivating Developers to Use Interoperable Standards for Data in Pandemic Health Apps.

The COVID-19 pandemic has brought along a massive increase in app development. However, most of these apps are not using interoperable data. The COMPASS project of the German COVID-19 Research Network of University Medicine ("Netzwerk Universitätsmedizin (NUM)") tackles this issue, by offering open-source technology, best practice catalogues, and suggestions for designing interoperable pandemic health applications (https://www.netzwerk-universitaetsmedizin.de/projekte/compass). Therefore, COMPASS conceived a framework that includes automated conformity checks as well as reference implementations for more efficient and pandemic-tailored app developments. It further aims to motivate and support developers to use interoperable standards.

Distinct immunologic and radiographic patterns in etanercept-induced lung injury.

Nonspecific clinical presentation of non-infectious, immune-mediated pulmonary complications of etanercept therapy makes the diagnosis difficult. While bronchoalveolar lavage fluid (BALF) cell analysis is frequently used in diagnosing drug-induced lung disease, BALF patterns in etanercept-induced lung injury (EILI) are not well established. Furthermore, previous reports of EILI diagnosis relied on transbronchial or surgical lung biopsies. Here, we report two patients who developed pulmonary toxicity after etanercept treatment. Both patients were diagnosed with EILI. While one patient presented with CD4(+)-predominant lymphocytic alveolitis (consistent with a sarcoid-like pattern), the other patient exhibited a CD8(+)-predominant pattern (consistent with hypersensitivity pneumonitis-like reaction). The different BAL patterns were accompanied by distinct radiographic findings. Both patients significantly improved after etanercept discontinuation and corticosteroid initiation. We propose that EILI can present with distinct immunologic and radiographic phenotypes. In addition, early BALF analysis with lymphocyte immunophenotyping can further define the underlying immunologic abnormalities, and thereby, avoid more invasive procedures.

Medication changes based on echocardiography in dialysis patients.

Kidney/Disease Outcome Quality Initiative (K/DOQI) guidelines recommend baseline echocardiography at the initiation of dialysis and every 3 years thereafter in patients for early detection of cardiac disease to optimize medical therapy. Because dialysis patients are at increased cardiovascular risk and thus most are already on cardioprotective medications, we hypothesize that serial screening echocardiography will not alter cardioprotective medications in dialysis patients. Retrospective analysis of medication administration of 231 dialysis patients was conducted. Patients were divided into 2 groups, those with and those without echocardiograms. Medication changes post echocardiography were compared with subjects without echocardiograms at comparable time points. The primary end point was the number of medication class changes that occurred in 2 months post echocardiography. Medication classes examined were beta blockers (BB), angiotensin converting enzyme inhibitors or angiotensin receptor blockers (ACEI/ARB), nitrates, calcium channel blockers (CCB), and statins. In the Echo group, there were 29 (19%) subjects with at least 1 medication class change post echocardiography, compared with 121 (81%) subjects without change. The number of patients on specific medication classes before and after echocardiography were BB (90 [60%] vs. 97 [65%], P=0.05), ACEI/ARB (74 [49%] vs. 82 [55%], P=0.01), nitrates (34 [23%] vs. 33 [22%], P=0.56), CCB (77 [51%] vs. 79 [53%], P=0.56), and statins (69 [46%] vs. 70 [47%], P=0.71). When compared with the No Echo group, there was no significant change in number of any medication classes. The occurrence of medication changes post echocardiography in dialysis patients is low and is not different than changes in routine care of dialysis patients without echocardiograms. Thus, serial screening echocardiography may not have added benefit to optimizing medical management of cardiovascular disease in dialysis patients. Further studies are warranted to demonstrate evidence for the use of serial screening echocardiography in this high-risk population.

Barriers to the implementation of programs for the prevention of mother-to-child transmission of HIV: a cross-sectional survey in rural and urban Uganda.

BACKGROUND: Implementation of programs for the prevention of mother-to-child transmission (PMTCT) of HIV faces a variety of barriers and challenges. The assessment of these challenges has generally been conducted in large urban health facilities. As programs expand into rural areas, the potential barriers that may be encountered there also need to be assessed. This study examines potential barriers that might affect the acceptability of interventions for PMTCT in rural and urban settings. RESULTS: Four hundred and four women at a large urban hospital and three rural clinics that had recently started implementing PMTCT were interviewed. Level of knowledge of MTCT and preference for rapid HIV testing were equally high in both areas, but rural women had a higher tendency to think that they should consult their husbands before testing, with borderline statistical significance (72% vs. 64% p = 0.09). Health facility-based deliveries were significantly lower among mothers in rural areas compared to those in the urban setting. Overall, significant predictors of willingness to test for HIV were post-primary education (OR = 3.1 95% CI 1.2, 7.7) and knowledge about rapid HIV tests (OR = 1.8, 95% CI 1.01, 3.4). The strongest predictor of willingness to accept an HIV test was the woman's perception that her husband would approve of her testing for HIV. Women who thought their husbands would approve were almost six times more likely to report a willingness to be tested compared to those who thought their husbands would not approve (OR = 5.6, 95% CI 2.8, 11.2). CONCLUSION: Lessons learned in large urban hospitals can be generalized to rural facilities, but the lower proportion of facility-based deliveries in rural areas needs to be addressed. Same-day results are likely to ensure high uptake of HIV testing services but male spousal involvement should be considered, particularly for rural areas. Universal Primary Education will support the success of PMTCT programs.