Dataset Information

Understanding data requirements of retrospective studies.

ABSTRACT: BACKGROUND AND OBJECTIVE:Usage of data from electronic health records (EHRs) in clinical research is increasing, but there is little empirical knowledge of the data needed to support multiple types of research these sources support. This study seeks to characterize the types and patterns of data usage from EHRs for clinical research. MATERIALS AND METHODS:We analyzed the data requirements of over 100 retrospective studies by mapping the selection criteria and study variables to data elements of two standard data dictionaries, one from the healthcare domain and the other from the clinical research domain. We also contacted study authors to validate our results. RESULTS:The majority of variables mapped to one or to both of the two dictionaries. Studies used an average of 4.46 (range 1-12) data element types in the selection criteria and 6.44 (range 1-15) in the study variables. The most frequently used items (e.g., procedure, condition, medication) are often available in coded form in EHRs. Study criteria were frequently complex, with 49 of 104 studies involving relationships between data elements and 22 of the studies using aggregate operations for data variables. Author responses supported these findings. DISCUSSION AND CONCLUSION:The high proportion of mapped data elements demonstrates the significant potential for clinical data warehousing to facilitate clinical research. Unmapped data elements illustrate the difficulty in developing a complete data dictionary.

SUBMITTER: Shenvi EC

PROVIDER: S-EPMC6626658 | biostudies-literature | 2015 Jan

REPOSITORIES: biostudies-literature

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Understanding data requirements of retrospective studies.

Shenvi Edna C EC Meeker Daniella D Boxwala Aziz A AA

International journal of medical informatics 20141012 1

<h4>Background and objective</h4>Usage of data from electronic health records (EHRs) in clinical research is increasing, but there is little empirical knowledge of the data needed to support multiple types of research these sources support. This study seeks to characterize the types and patterns of data usage from EHRs for clinical research.<h4>Materials and methods</h4>We analyzed the data requirements of over 100 retrospective studies by mapping the selection criteria and study variables to da ...[more]

PMID: 25453276

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Project description:The digitization of herbaria and their online access will greatly facilitate access to plant collections around the world. This will improve the efficiency of taxonomy and help reduce inequalities between scientists. The Botanic Garden Meise, Belgium, is currently digitizing 1.2 million specimens including label data. In this paper we describe the user requirements analysis conducted for a new herbarium web portal. The aim was to identify the required functionality, but also to assist in the prioritization of software development and data acquisition. The Garden conducted the analysis in cooperation with Clockwork, the digital engagement agency of Ordina. Using a series of interactive interviews, potential users were consulted from universities, research institutions, science-policy initiatives and the Botanic Garden Meise. Although digital herbarium data have many potential stakeholders, we focused on the needs of taxonomists, ecologists and historians, who are currently the primary users of the Meise herbarium data portal. The three categories of user have similar needs, all wanted as much specimen data as possible, and for those data, to be interlinked with other digital resources within and outside the Garden. Many users wanted an interactive system that they could comment on, or correct online, particularly if such corrections and annotations could be used to rank the reliability of data. Many requirements depend on the quality of the digitized data associated with each specimen. The essential data fields are the taxonomic name; geographic location; country; collection date; collector name and collection number. Also all researchers valued linkage between biodiversity literature and specimens. Nevertheless, to verify digitized data the researchers still want access to high quality images, even if fully transcribed label information is provided. The only major point of disagreement is the level of access users should have and what they should be allowed to do with the data and images. Not all of the user requirements are feasible given the current technical and regulatory landscape, however, the potential of these suggestions is discussed. Currently, there is no off-the-shelf solution to satisfy all these user requirements, but the intention of this paper is to guide other herbaria who are prioritising their investment in digitization and online web functionality.

Dataset Information

Understanding data requirements of retrospective studies.

Publications

Understanding data requirements of retrospective studies.

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