Despite great promise, trials that ascertain patient clinical data from electronic health records (EHR), referred to here as "EHR-sourced" trials, are limited by uncertainty about how existing trial s...
We describe a demonstration project that used EHR data to complement data collected for a contemporary multi-center pharmaceutical industry outcomes trial, and how a central coordinating center suppor...
While broadening the type of sites able to participate in EHR-sourced trials may lead to greater generalizability and improved enrollment, sites with fewer technical resources may require additional s...
Thorough data stewardship is a key enabler of comprehensive health research. Processes such as data collection, storage, access, sharing, and analytics require researchers to follow elaborate data man...
This scoping review identifies and discusses concepts, approaches, implementation experiences, and lessons learned in FAIR initiatives in health research data....
The Arksey and O'Malley stage-based methodological framework for scoping reviews was applied. PubMed, Web of Science, and Google Scholar were searched to access relevant publications. Articles written...
A total of 2.18% (34/1561) of the screened articles were included in the final review. The authors reported FAIRification approaches, which include interpolation, inclusion of comprehensive data dicti...
This work summarises projects, tools, and workflows for the FAIRification of health research data. The comprehensive review shows that implementing the FAIR concept in health data stewardship carries ...
RR2-10.2196/22505....
Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions....
Large healthcare datasets can provide insight that has the potential to improve outcomes for patients. However, it is important to understand the strengths and limitations of such datasets so that the...
Data were extracted from the HES database for the period 1st April 2013 to 31st March 2021 for patients with a diagnosis of autism. First spells in hospital during the study period were identified for...
Data were available for 172,324 unique patients who had been recorded as having an autism diagnosis on first admission. In total, 43.7 % of subsequent spells were found to have inconsistencies. The fe...
Data inconsistencies in the HES database were relatively common in autistic patients and were associated a number of patient and hospital admission characteristics. Such inconsistencies have the poten...
Analysis of health care real-world data (RWD) provides an opportunity to observe the actual patient diagnostic, treatment, and outcome events. However, researchers should understand the possible limit...
A methodology for detecting the presence of shifted dates in RWD was developed by considering various approaches to confirm the expected occurrences of medical events, including unique temporal occurr...
Twenty-eight of the 71 HCOs analyzed were predicted by methodology and confirmed by their data providers to have shifted data. Likewise, 39 were predicted and confirmed to not have shifted data. With ...
The presence of date shifting for U.S. HCOs may be reliably detected assessing whether the routine exams should always occur on weekdays....
Individual researchers and research networks have developed and applied different approaches to assess the data quality of electronic health record (EHR) data. A previously published rules-based metho...
The emergency department (ED) is pivotal in treating serious injuries, making it a valuable source for population-based injury surveillance. In Victoria, information that is relevant to injury surveil...
A retrospective observational study of administrative healthcare data....
VEMD and VAED data from July 2014 to June 2019 were compared. Including only hospitals contributing to both datasets, cases that (1) arrived at the ED and (2) were subsequently admitted, were selected...
While the overall number of cases was similar, VAED outnumbered VEMD cases (414 630 vs 404 608), suggesting potential under-reporting of injuries in the ED. Age-related differences indicated a relativ...
Injury cases were more numerous in the VAED than in the VEMD even though the number is expected to be equal based on case selection. Older patients were under-represented in the VEMD; this could partl...
Metabolomics based on high-resolution mass spectrometry has become a powerful technique in biomedical research. The development of various analytical tools and online libraries has promoted the identi...
As a national effort to better understand the current pandemic, three cohorts collect sociodemographic and clinical data from coronavirus disease 2019 (COVID-19) patients from different target populat...
The goal of this work is to assure high consistency of research data mapped to the GECCO data model. In particular, it aims at identifying contradictions within interdependent GECCO data items of the ...
All suitable data items from each of the three NAPKON cohorts are mapped to the GECCO items. A consistency assessment tool (dqGecco) is implemented, following the design of an existing quality assessm...
Our consistency assessment tool helped in correcting the mapping procedure and reveals remaining contradictory value combinations within COVID-19 symptoms, vital signs, and COVID-19 severity. Consiste...
An efficient and portable tool capable of discovering inconsistencies in the COVID-19 domain has been developed and applied to three different cohorts. As the GECCO dataset is employed in different pl...
In regard to health service planning and delivery, the use of information at different levels in the health system is vital, ranging from the influencing of policy to the programming of action to the ...
The five-stage approach of Arksey and O'Malley progressed by Levac et al. and Peters was followed. Three databases (PubMed, Web of Science and Embase) were searched, along with relevant conference pro...
Overall, DHIS2 data are being used but there are few detailed descriptions of this usage in peer reviewed or grey literature. We find that, commonly, there exists a centralised versus decentralised pa...
We conclude with some suggestions for a way forward, namely: i) the need to document in more detail and share how data are being used, ii) the need to investigate how data were created and who uses su...
