Dataset Information

Assessing the uptake of persistent identifiers by research infrastructure users.

ABSTRACT: Significant progress has been made in the past few years in the development of recommendations, policies, and procedures for creating and promoting citations to data sets, software, and other research infrastructures like computing facilities. Open questions remain, however, about the extent to which referencing practices of authors of scholarly publications are changing in ways desired by these initiatives. This paper uses four focused case studies to evaluate whether research infrastructures are being increasingly identified and referenced in the research literature via persistent citable identifiers. The findings of the case studies show that references to such resources are increasing, but that the patterns of these increases are variable. In addition, the study suggests that citation practices for data sets may change more slowly than citation practices for software and research facilities, due to the inertia of existing practices for referencing the use of data. Similarly, existing practices for acknowledging computing support may slow the adoption of formal citations for computing resources.

SUBMITTER: Mayernik MS

PROVIDER: S-EPMC5386254 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Assessing the uptake of persistent identifiers by research infrastructure users.

Mayernik Matthew S MS Maull Keith E KE

PloS one 20170410 4

Significant progress has been made in the past few years in the development of recommendations, policies, and procedures for creating and promoting citations to data sets, software, and other research infrastructures like computing facilities. Open questions remain, however, about the extent to which referencing practices of authors of scholarly publications are changing in ways desired by these initiatives. This paper uses four focused case studies to evaluate whether research infrastructures a ...[more]

PMID: 28394907

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Project description:Clinical research infrastructure is one of the unsung heroes of the scientific response to the current COVID-19 pandemic. The extensive, long-term funding into research support structures, skilled people, and technology allowed the United Kingdom research response to move off the starting blocks at pace by utilizing pre-existing platforms. The increasing focus from funders on evaluating the outcomes and impact of research infrastructure investment requires both a reframing and progression of the current models in order to address the contribution of the underlying support infrastructure. The majority of current evaluation/outcome models focus on a "pipeline" approach using a methodology which follows the traditional research funding route with the addition of quantitative metrics. These models fail to embrace the complexity caused by the interplay of previous investment, the coalescing of project outputs from different funders, the underlying infrastructure investment, and the parallel development across different parts of the system. Research infrastructure is the underpinning foundation of a project-driven research system and requires long-term, sustained funding and capital investment to maintain scientific and technological expertise. Therefore, the short-term focus on quantitative metrics that are easy to collect and interpret and that can be assessed in a roughly 5-year funding cycle needs to be addressed. The significant level of investment in research infrastructure necessitates investment to develop bespoke methodologies that develop fit-for-purpose, longer-term/continual approach(es) to evaluation. Real-world research should reflect real-world evaluation and allow for the accrual of a narrative of value indicators that build a picture of the contribution of infrastructure to research outcomes. The linear approach is not fit for purpose, the research endeavour is a complex, twisted road, and the evaluation approach needs to embrace this complexity through the development of realist approaches and the rapidly evolving data ecosystem. This paper sets out methodological challenges and considers the need to develop bespoke methodological approaches to allow a richer assessment of impact, contribution, attribution, and evaluation of research infrastructure. This paper is the beginning of a conversation that invites the community to "take up the mantle" and tackle the complexity of real-world research translation and evaluation.

Project description:BackgroundGaps in electronic health record (EHR) data collection and the paucity of standardized clinical data elements (CDEs) captured from electronic and digital data sources have impeded research efforts aimed at understanding the epidemiology and quality of care for opioid use disorder (OUD). We identified existing CDEs and evaluated their validity and usability, which is required prior to infrastructure implementation within EHRs.MethodsWe conducted (a) a systematic literature review of publications in Medline, Embase and the Web of Science using a combination of at least one term related to OUD and EHR and (b) an environmental scan of publicly available data systems and dictionaries used in national informatics and quality measurement of policy initiatives. Opioid-related data elements identified within the environmental scan were compared with related data elements contained within nine common health data code systems and each element was graded for alignment with match results categorized as "exact", "partial", or "none."ResultsThe literature review identified 5186 articles for title search, of which 75 abstracts were included for review and 38 articles were selected for full-text review. Full-text articles yielded 237 CDEs, only 12 (5.06%) of which were opioid-specific. The environmental scan identified 379 potential data elements and value sets across 9 data systems and libraries, among which only 84 (22%) were opioid-specific. We found substantial variability in the types of clinical data elements with limited overlap and no single data system included CDEs across all major data element types such as substance use disorder, OUD, medication and mental health. Relative to common health data code systems, few data elements had an exact match (< 1%), while 61% had a partial match and 38% had no matches.ConclusionsDespite the increasing ubiquity of EHR data standards and national attention placed on the opioid epidemic, we found substantial fragmentation in the design and construction of OUD related CDEs and little OUD specific CDEs in existing data dictionaries, systems and literature. Given the significant gaps in data collection and reporting, future work should leverage existing structured data elements to create standard workflow processes to improve OUD data capture in EHR systems.

Project description:BackgroundPrivacy should be protected in medical data that include patient information. A distributed research network (DRN) is one of the challenges in privacy protection and in the encouragement of multi-institutional clinical research. A DRN standardizes multi-institutional data into a common structure and terminology called a common data model (CDM), and it only shares analysis results. It is necessary to measure how a DRN protects patient information privacy even without sharing data in practice.ObjectiveThis study aimed to quantify the privacy risk of a DRN by comparing different deidentification levels focusing on personal health identifiers (PHIs) and quasi-identifiers (QIs).MethodsWe detected PHIs and QIs in an Observational Medical Outcomes Partnership (OMOP) CDM as threatening privacy, based on 18 Health Insurance Portability and Accountability Act of 1996 (HIPPA) identifiers and previous studies. To compare the privacy risk according to the different privacy policies, we generated limited and safe harbor data sets based on 16 PHIs and 12 QIs as threatening privacy from the Synthetic Public Use File 5 Percent (SynPUF5PCT) data set, which is a public data set of the OMOP CDM. With minimum cell size and equivalence class methods, we measured the privacy risk reduction with a trust differential gap obtained by comparing the two data sets. We also measured the gap in randomly sampled records from the two data sets to adjust the number of PHI or QI records.ResultsThe gaps averaged 31.448% and 73.798% for PHIs and QIs, respectively, with a minimum cell size of one, which represents a unique record in a data set. Among PHIs, the national provider identifier had the highest gap of 71.236% (71.244% and 0.007% in the limited and safe harbor data sets, respectively). The maximum size of the equivalence class, which has the largest size of an indistinguishable set of records, averaged 771. In 1000 random samples of PHIs, Device_exposure_start_date had the highest gap of 33.730% (87.705% and 53.975% in the data sets). Among QIs, Death had the highest gap of 99.212% (99.997% and 0.784% in the data sets). In 1000, 10,000, and 100,000 random samples of QIs, Device_treatment had the highest gaps of 12.980% (99.980% and 87.000% in the data sets), 60.118% (99.831% and 39.713%), and 93.597% (98.805% and 5.207%), respectively, and in 1 million random samples, Death had the highest gap of 99.063% (99.998% and 0.934% in the data sets).ConclusionsIn this study, we verified and quantified the privacy risk of PHIs and QIs in the DRN. Although this study used limited PHIs and QIs for verification, the privacy limitations found in this study could be used as a quality measurement index for deidentification of multi-institutional collaboration research, thereby increasing DRN safety.

Dataset Information

Assessing the uptake of persistent identifiers by research infrastructure users.

Publications

Assessing the uptake of persistent identifiers by research infrastructure users.

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