Institutional Research Data Research Articles

Working towards securing and building a trusted institutional research data repository through the CoreTrustSeal process: case of Cape Peninsula University of Technology data repository

Working towards securing and building a trusted institutional research data repository through the CoreTrustSeal process: case of Cape Peninsula University of Technology data repository

Breast Cancer Screening Interval: Effect on Rate of Late-Stage Disease at Diagnosis and Overall Survival.

Controversy continues regarding the effect of screening mammography on breast cancer outcomes. We evaluated late-stage cancer rate and overall survival (OS) for different screening intervals using a real-world institutional research data mart. Patients having both a cancer registry record of new breast cancer diagnosis and prediagnosis screening history between 2004 and 2019 were identified from our institutional research breast data mart. Time interval between the two screening mammograms immediately preceding diagnosis and the time to cancer diagnosis were determined. Screening interval was deemed annual if ≤15 months, biennial if >15 and ≤27 months, intermittent if >27 months, and baseline if only one prediagnosis screen was known. The primary end point was late-stage cancer (TNM stage IIB or worse), and the secondary end point was OS. The association of screening interval and late-stage cancer was analyzed using multivariable logistic regression adjusting for prediagnosis characteristics. Proportional hazards regression was used for survival analysis. Potential lead time was analyzed using survival from a uniform fixed time point. In total, 8,145 patients with breast cancer had prediagnosis screening mammography in the timeframe. The percentage of late-stage cancers diagnosed increased significantly with screening interval with 9%, 14%, and 19% late stages for annual, biennial, and intermittent groups (P < .001), respectively. The trend persisted regardless of age, race, and menopausal status. Biennial and intermittent groups had substantially worse OS than the annual screened group, with relative hazards of 1.42 (95% CI, 1.11 to 1.82) and 2.69 (95% CI, 2.11 to 3.43), respectively, and 1.39 (95% CI, 1.08 to 1.78) and 2.01 (95% CI, 1.58 to 2.55) after adjustment for potential lead time. Annual mammographic screening was associated with lower risk of late-stage cancer and better OS across clinical and demographic subgroups. Our study suggests benefit of annual screening for women 40 years and older.

Developing Institutional Research Data Management Strategies in Canada: Setting the Foundation for Stronger Partnerships and Collaborations

Developing Institutional Research Data Management Strategies in Canada: Setting the Foundation for Stronger Partnerships and Collaborations

Equity, Diversity, and Inclusion in Institutional Research Data Management Strategies

Research data management (RDM) is a field of emerging concern for academic librarians. As funder agencies increasingly mandate institutions and researchers to ethically and responsibly manage their research data, academic librarians are frequently tasked with creating institutional strategies and services to support researchers. This article explores how a racialized librarian at a medium-sized, teaching-focused Canadian university created an institutional research data management strategy through a process informed by critical librarianship research and contributive justice (Gomberg, 2016; Honma &amp; Chu, 2018). It examines the lack of equity, diversity, and inclusion (EDI) principles in both funder directives and RDM research literature and proposes an approach to do institutional RDM work in an EDI-centered way.

Building Community to Promote Civic Engagement: the Town Hall Meeting Program at California State University, Fullerton

The Town Hall Meeting (THM) program at California State University, Fullerton has been annually incorporated into several Introduction to American Politics course sections since 2011, to improve academic performance and promote civic engagement among enrolled students. This article provides a detailed analysis of results from a 2017 quasi-experimental study of the program designed to overcome methodological challenges in earlier studies, using close-ended and open-ended surveys and institutional research data on student demographics and academic performance. The research finds that the THM program successfully increases students’ political knowledge, political efficacy, and interest in political engagement and that it does so through the critically important and mediating variable of students’ sense of a strong classroom community. This suggests that Introduction to American Government courses that build communal connections in the classroom can more successfully engage students politically.

Uptake of Modern Family Planning Among Postpartum Women Attending Postnatal Clinic in Busolwe Hospital, Butaleja District, Eastern Uganda

Background: Family planning (FP) is key to preventing the social, economic and health consequences resulting from unintended pregnancies. Failure to control family size and child spacing has pressing negative effects on the health of women, their children, the community and the nation at large. Despite various family planning interventions such as Uganda Family Planning Costed Implementation Plan (UFPCIP) and Postpartum Family Planning Action Plan (PFAP), the unmet FP need still stagnates as high as 28%. Therefore, this study determined the prevalence and assessed the factors associated with modern family planning uptake among postpartum women attending Postnatal Care (PNC) in Busolwe Hospital, Butaleja district, Uganda. Methods: A cross-sectional study was conducted among 361 postpartum mothers attending PNC. Quantitative approach was applied and data collected using pre-tested semi-structured questionnaire. Participants recruited by consecutive sampling. Ethical considerations and approval was sought from Lira University institutional research board (IRB) and data was analyzed using SPSS version 23. Results: A total of 361 participants were recruited for the study. Majority of the participants 167(46.3%) aged between 17-24 years with mean age 26.01 (SD±5.877). Over all 122(34%) was the prevalence of modern FP uptake. Factors independently associated with modern family planning at multivariate analysis were; Education level (P=0.007, OR 0.048, 95% CI 0.005-0.435); occupation (P= 0.039, OR 0.432, 95% CI 0.195-0.958), Income (P=0.000, OR 0.209, 95% CI 0.088-0.494), Side effects (P=0.014, OR 3.062, 95% CI 1.249-7.508), and Perception about many children (P=0.000, OR 0.128, 95% CI 0.049-0.339). Conclusion: The prevalence of modern family planning was low in Butaleja district. This was due to inadequate education among women, unemployment, low-income status, desire for many children and the side effects associated with family planning use.

Are Institutional Research Data Policies in the US Supporting the FAIR Principles? A Content Analysis

Objective: The FAIR principles were created with the goal of enhancing the reusability of research data and to give guidance on how to make data Findable, Accessible, Interoperable and Reusable. In this article we explore the role of institutional research data policies in enabling and encouraging researchers at their institutions to generate FAIR data.Methods: We identified the research data policies in place for “very high research activity” institutions (as defined by Carnegie classification) in the United States. We created a list of 31 criteria, based on previous work by Davidson et al. (2019) and Briney et al. (2015), and evaluated the 40 policies using a content analysis methodology.&amp;nbsp;Results: The guiding principles and the definitions for research data in the policies support the idea that institutional policies are a potential tool for the implementation of the FAIR principles. However, our analysis indicates that they are not generally used for that purpose. Only one policy mentions FAIR. Data sharing is mentioned in half of the policies, but 11 of these only note this concept in the context of funder requirements. Access and retention sections are mostly written without considering publicly available data. Twenty-nine policies do not mention data documentation.&amp;nbsp;Conclusions: We discuss ways in which these institutional policies represent a missed opportunity to implement the FAIR principles and suggest ways policies could be modified to encourage researchers to follow them. We also discuss future research opportunities to examine how policy implementation may affect what institutional support researchers receive.

Research Data Management Practices at the University of Namibia: Moving Towards Adoption

The management of research data in academic institutions is increasing across most disciplines. In Namibia, the requirement to manage research data, making it available for the purposes of sharing, preservation and to support research findings, has not yet been mandated. At the University of Namibia (UNAM) there is no institutional research data management (RDM) culture, yet RDM may nevertheless be practiced among its researchers. The extent to which these practices have been adopted is, however, not known. This study investigated the extent of RDM adoption by researchers at UNAM. It identifies current or potential challenges in managing research data, and proposes solutions to some of these challenges that could aid the university as it attempts to encourage the adoption of RDM practices. The investigation used Rogers’ Diffusion of Innovations (DOI) theory, with a focus on the innovation-decision process, as a means to establish where UNAM researchers are in the process of adopting RDM practices. The population under study were the UNAM faculty members who conduct research as part of their academic duties. Questionnaires were used to gather quantitative data. The study found that some researchers practice RDM to some extent out of their own free will, but there are many challenges that hinder these practices. Overall, though, there is a lack of interest in RDM as the knowledge of the concept among researchers is relatively low. The study found that most researchers were at the knowledge stage of the innovation-decision process and recommended, among other things, that the university puts effort into creating RDM awareness and encouraging data sharing, and that it moves forward with infrastructure and policy development so that RDM can be fully adopted by the researchers of the institution.

Metadata Application Profiles in U. S. Academic Libraries: A Document Analysis

This paper describes a document analysis of 24 metadata application profiles (MAPs) used by academic libraries in the United States. The MAPs under study were collected from (a) the DLF AIG Metadata Application Profile Clearinghouse and (b) a Google search of .edu domains. Data collection and analysis took place between December 2020 and February 2021. While most of the MAPs under review provided metadata guidelines for digital collections, a small number were intended for institutional repositories or research data management. The study’s findings reveal MAP features and content, usage of controlled vocabularies and standards, and other characteristics pertaining to MAP document scope, contents and format in this context. In addition to its discussion of the literature, the paper’s findings should help metadata specialists and others involved in digital collection management gain insights useful in the development or revision of their own metadata documentation. Further, these findings offer a current glimpse of metadata application practices among U.S. academic libraries generally.

Automating Research Data Management Using Machine-Actionable Data Management Plans

Many research funders mandate researchers to create and maintain data management plans (DMPs) for research projects that describe how research data is managed to ensure its reusability. A DMP, being a static textual document, is difficult to act upon and can quickly become obsolete and impractical to maintain. A new generation of machine-actionable DMPs (maDMPs) was therefore proposed by the Research Data Alliance to enable automated integration of information and updates. maDMPs open up a variety of use cases enabling interoperability of research systems and automation of data management tasks. In this article, we describe a system for machine-actionable data management planning in an institutional context. We identify common use cases within research that can be automated to benefit from machine-actionability of DMPs. We propose a reference architecture of an maDMP support system that can be embedded into an institutional research data management infrastructure. The system semi-automates creation and maintenance of DMPs, and thus eases the burden for the stakeholders responsible for various DMP elements. We evaluate the proposed system in a case study conducted at the largest technical university in Austria and quantify to what extent the DMP templates provided by the European Commission and a national funding body can be pre-filled. The proof-of-concept implementation shows that maDMP workflows can be semi-automated, thus workload on involved parties can be reduced and quality of information increased. The results are especially relevant to decision makers and infrastructure operators who want to design information systems in a systematic way that can utilize the full potential of maDMPs.

Getting a Grip on Research Data Management

In March 2021 the Tri-Agency released its Research Data Management Policy, including its three pillar requirements. This article reviews some key points from the Alliance RDM (Portage Network) workshop "Putting the Tri-Agency Policy into Practice: Workshopping Your Institutional Research Data Management Strategy."

An initial evaluation of research data management online training at the University of New South Wales

In response to low research data management engagement at the University of New South Wales, Australia, an introductory research data management online training was developed and rolled out to all newly enrolled Higher Degree Research candidates. This article outlines the development process of the research data management online training and provides an initial evaluation of the training from the perspectives of the candidates and the university. As such, this article joins up with existing literature on research data management training to assist institutions and research data management stakeholders with the development of research data management training to help researchers and research students enact research data management best practices. Overall, the majority of the candidates ( n = 643) were satisfied with the quality of the training and found it helpful. The benefits the training brought to the university are mapped out by linking institutional research data management problems, the research data management online training’s design and findings into a coherent narrative.

Sex-based Differences in Survival After Repair of Ruptured Abdominal Aortic Aneurysm

We have described the sex-based differences in survival after repair of ruptured abdominal aortic aneurysms (rAAAs). We performed a single-center retrospective review of data from the institutional Clinical Research Data Warehouse. Adults who had undergone either open surgery (OS) or endovascular aneurysm repair (EVAR) for rAAAs between January 1996 and December 2018 were included in the present study. Patients whose EVAR was converted to OS were included in the OS group. Patients with untreated rAAAs, rAAAs treated at an outside hospital, or ruptured thoracic or thoracoabdominal aortic aneurysms were excluded. The primary outcome was survival. The secondary outcomes included mode of repair, postoperative complications, and discharge disposition. We identified 193 patients (20.7% women) who had undergone rAAA repair (35.2% EVAR). No significant association was found between sex and mode of repair. The 1- and 5-year survival was 32.5% and 29.8% for the women and 55.8% and 40.8% for the men, respectively (P = .001). The 1- and 5-year survival stratified by sex and mode of repair was EVAR and male sex, 69% and 50.7%; OS and male sex, 48% and 35.8%; EVAR and female sex, 45.5% and 34.1%; and OS and female sex, 27.6% and 27.6%, respectively (P = .002; Fig). Multivariable analysis showed that men undergoing OS had lower mortality compared with women undergoing OS (adjusted hazard ratio, 0.51; 95% confidence interval, 0.32-0.81; P = .04). No difference was found in mortality between the men and women undergoing EVAR, between the women undergoing EVAR and the women undergoing OS, and between the men undergoing EVAR and the men undergoing OS (Table). The men undergoing OS had a greater incidence of renal failure requiring renal replacement therapy (29.9%; P = .026), bowel ischemia (23.3%; P < .001), and pneumonia (28.9%; P = .022) compared with the other groups. The men undergoing EVAR had a greater incidence of urinary tract infection (9.3%; P = .037), and the women undergoing OS had a greater incidence of prolonged intubation (66.7%; P < .001) compared with the other groups. Fewer women were discharged to home (10.0% vs 39.9%; P < .001) and more were discharged to hospice or had died compared with the men (60.0% vs 32.7%; P = .002). No difference was found in the rates of discharge to a rehabilitation facility for the men and women. OS for men was associated with lower mortality compared with OS for women for treatment of rAAAs. No difference was found in the mortality of men and women who had undergone EVAR for rAAAs. OS for the men with a rAAA was associated with more complications compared with the other groups. The women were less likely to be discharged home and were more likely to be discharged to hospice care or to have died after rAAA repair.Table IMultivariable regression model showing adjusted hazard ratio stratified by group and age category (n = 193; events, n = 137)VariableaHR95% CIP valueGroup.027 EVAR female vs OS male1.770.79-3.96.162 OS female vs OS male1.961.23-3.11.004 EVAR male vs OS male1.000.61-1.62.992Age ≥70 vs <70 years1.791.19-2.68.005Aneurysm position.045 Juxtarenal vs infrarenal1.520.96-2.39.074 Suprarenal vs infrarenal3.971.36-11.58.012 Missing vs infrarenal2.080.79-5.43.136Transferred (yes vs no)0.670.46-0.96.028Type of rupture (free vs contained)1.891.08-3.31.025Previous known history of aneurysm (yes vs no or NR)1.541.05-2.25.028aHR, adjusted hazard ratio; CI, confidence interval; EVAR, endovascular aneurysm repair; NR, not reported; OS, open surgery. Open table in a new tab

Clinical outcomes in pancreatic ductal adenocarcinoma (PDAC) patients with underlying autoimmune disease (AID).

e16233 Background: Chronic inflammation from AID and the resultant immunosuppression from treatment increases the risk of various malignancies. Risk of PDAC is increased in patients (pts) with AID, however, there is paucity of cancer specific outcome data in these pts. We retrospectively reviewed the outcomes of pts with PDAC and AIDs to include Crohn’s disease (CD), ulcerative colitis (UC) and rheumatoid arthritis (RA). Methods: All pts aged 18 or older, diagnosed with PDAC in the setting of CD, UC and RA between January 2010 and December 2019 were included. Patients were identified using our institutional Clinical Research Data Warehouse (CRDW) and chart review. Clinical data was obtained by querying a cohort discovery tool (i2b2) from the CRDW with IRB approval. Pts with incomplete documentation were excluded. Descriptive statistics were used to report demographics. Overall survival (OS) was calculated from the time of diagnosis of PDAC to the date of death or last follow-up. Deaths from any cause were included in the survival analysis. OS and relapse free survival (RFS) were estimated using Kaplan-Meier methods. Results: We identified 51 pts who met inclusion criteria; 26 (51%) had RA, 15 (29.4%) had UC and 10 (19.6%) had CD. Median age at diagnosis of PDAC was 55.2 years, 49% were male (Table 1). Median duration from diagnosis of AID to PDAC for pts with CD, RA and UC was 173, 107 and 105 months, respectively. Metastatic disease at diagnosis was present in 19 (37.3%) of the 51 pts and 32 (62.7%) had localized disease (LD). Among the 17 pts with LD who underwent surgery, 6 (35.3%) experienced relapse with a median RFS of 14 months. The median OS of pts with LD who underwent surgery was 44 months compared to 8.25 months for those who did not. Among the 19 pts with metastatic disease at diagnosis, 0, 1, 2 &amp; 3 lines of chemotherapy was received by 4 (21.1%), 8 (78.9%), 3 (36.8%) and 2 (21.1%) of pts, respectively. Median OS of patients with metastatic disease at diagnosis was 8.9 months. Conclusions: The inflammatory milieu and immunosuppression associated with AID treatment may be responsible for the early onset of PDAC in these pts. Although our sample size is small, pts with AID and PDAC who complete all planned curative intent therapy appear to have excellent outcomes, emphasizing the importance of early diagnosis and perhaps routine screening in pts with AID. Receipt of chemotherapy and OS of pts with metastatic PDAC in the setting of AID does not appear to be significantly compromised despite their exclusion from several clinical trials. Demographics.[Table: see text]

Institutional Repositories for Public Engagement

Most higher-education institutions strive to be publicly engaged and community centered. These institutions leverage faculty, researchers, librarians, community liaisons, and communication specialists to meet this mission, but they have largely underutilized the potential of institutional repositories. Academic institutions can use institutional repositories to provide open access and long-term preservation to institutional gray literature, research data, university publications, and campus research products that have tangible, real-world applications for the communities they serve. Using examples from the University of Minnesota, this article demonstrates how making this content discoverable, openly accessible, and preserved for the future through an institutional repository not only increases the value of this publicly-engaged work but also creates a lasting record of a university’s public engagement efforts and contributes to the mission of the institution.

Why is getting credit for your data so hard?

Institutions, funding bodies, and national research organizations are pushing for more data sharing and FAIR data. Institutions typically implement data policies, frequently supported by an institutional data repository. Funders typically mandate data sharing. So where does this leave the researcher? How can researchers benefit from doing the additional work to share their data? In order to make sure that researchers and institutions get credit for sharing their data, the data needs to be tracked and attributed first. In this paper we investigated where the research data ended up for 11 research institutions, and how this data is currently tracked and attributed. Furthermore, we also analysed the gap between the research data that is currently in institutional repositories, and where their researchers truly share their data. We found that 10 out of 11 institutions have most of their public research data hosted outside of their own institution. Combined, they have 12% of their institutional research data published in the institutional data repositories. According to our data, the typical institution had 5% of their research data (median) published in the institutional repository, but there were 4 universities for which it was 10% or higher. By combining existing data-to-article graphs with existing article-to- researcher and article-to-institution graphs it becomes possible to increase tracking of public research data and therefore the visibility of researchers sharing their data typically by 17x. The tracking algorithm that was used to perform analysis and report on potential improvements has subsequently been implemented as a standard method in the Mendeley Data Monitor product. The improvement is most likely an under-estimate because, while the recall for datasets in institutional repositories is 100%, that is not the case for datasets published outside the institutions, so there are even more datasets still to be discovered.

Study protocol of a multicentre cohort pilot study implementing an expanded preconception carrier-screening programme in metropolitan and regional Western Australia

IntroductionPreconception carrier screening (PCS) identifies couples at risk of having children with recessive genetic conditions. New technologies have enabled affordable sequencing for multiple disorders simultaneously, including identifying carrier status for...

Current Trends in Research Data Management

This article presents an analysis of policies, guidelines and requirements set by governments of a number of countries in the field of data openness, grantors, and publishers, as well as a review of publications, which allows tracing the main trends in research data management, and the Guide to Research Data Management, which reflects the basic concepts and features of preparing a data management plan, metadata standards, data identifiers, etc. It is concluded that it is necessary to develop service management and create institutional and national research data management services.

MICE vs PPCA: Missing data imputation in healthcare

Abstract Retrospective analyses of real-world clinical data face challenges owing to the absence of some data elements. Historically, missing data was addressed by first classifying its presence into one of three categories: missing completely at random (MCAR), missing at random (MAR) and missing not at random (MNAR). Imputation techniques continue to be developed and tested to gauge their capacity to mitigate the negative impact of missing data types on analyses and their results. This study undertook a comparison of two techniques of data imputation: probabilistic principal component analysis (PPCA) and multiple imputation using chained equations (MICE). Retrospective data from 41,543 unique patients including both medical and dental variables (n = 116) were mined from the institutional research data warehouse, which captures data through an integrated medical and dental electronic health record (iEHR). A subset with complete data on all variables of interest was sampled. “Missing data” were artificially created by randomly removing data elements to create the missing data problem. Applying PPCA and MICE, the capacity of the two techniques to create an accurate imputed dataset was tested. Comparisons were drawn between imputed dataset and sampled subset, to investigate which technique more closely simulated the true data. PPCA outperformed MICE with an overall correct imputation percentage (accuracy) and root mean square error (RMSE) of approximately 65% and 0.29, respectively, compared to MICE, which yielded approximately 38% accuracy with a RMSE of 0.83. Overall, this study concluded that PPCA demonstrated higher capacity to impute MCAR data than MICE.

When Does Institutional Research Rhetoric Create a Student Cause of Action?

This chapter asserts that the use and reporting of institutional research (IR) data is an area ripe for litigation. The chapter explores possible student causes of action as they relate to institutional research (IR) data and compares the probable outcomes to reported student lawsuits. The chapter concludes with recommended liability‐avoiding practices for IR offices.