Étiquette : biomedical research

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Health Sciences Libraries Advancing Collaborative Clinical Research Data Management in Universities

Authors : Tania P. Bardyn, Emily F. Patridge, Michael T. Moore, Jane J. Koh

Purpose

Medical libraries need to actively review their service models and explore partnerships with other campus entities to provide better-coordinated clinical research management services to faculty and researchers. TRAIL (Translational Research and Information Lab), a five-partner initiative at the University of Washington (UW), explores how best to leverage existing expertise and space to deliver clinical research data management (CRDM) services and emerging technology support to clinical researchers at UW and collaborating institutions in the Pacific Northwest.

Methods

The initiative offers 14 services and a technology-enhanced innovation lab located in the Health Sciences Library (HSL) to support the University of Washington clinical and research enterprise.

Sharing of staff and resources merges library and non-library workflows, better coordinating data and innovation services to clinical researchers. Librarians have adopted new roles in CRDM, such as providing user support and training for UW’s Research Electronic Data Capture (REDCap) instance.

Results

TRAIL staff are quickly adapting to changing workflows and shared services, including teaching classes on tools used to manage clinical research data. Researcher interest in TRAIL has sparked new collaborative initiatives and service offerings. Marketing and promotion will be important for raising researchers’ awareness of available services.

Conclusions

Medical librarians are developing new skills by supporting and teaching CRDM. Clinical and data librarians better understand the information needs of clinical and translational researchers by being involved in the earlier stages of the research cycle and identifying technologies that can improve healthcare outcomes.

At health sciences libraries, leveraging existing resources and bringing services together is central to how university medical librarians will operate in the future.

DOI : https://doi.org/10.7191/jeslib.2018.1130

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Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing

Authors : Michelle M. Mello, Van Lieou, Steven N. Goodman

Background

Sharing of participant-level clinical trial data has potential benefits, but concerns about potential harms to research participants have led some pharmaceutical sponsors and investigators to urge caution. Little is known about clinical trial participants’ perceptions of the risks of data sharing.

Methods

We conducted a structured survey of 771 current and recent participants from a diverse sample of clinical trials at three academic medical centers in the United States. Surveys were distributed by mail (350 completed surveys) and in clinic waiting rooms (421 completed surveys) (overall response rate, 79%).

Results

Less than 8% of respondents felt that the potential negative consequences of data sharing outweighed the benefits. A total of 93% were very or somewhat likely to allow their own data to be shared with university scientists, and 82% were very or somewhat likely to share with scientists in for-profit companies.

Willingness to share data did not vary appreciably with the purpose for which the data would be used, with the exception that fewer participants were willing to share their data for use in litigation.

The respondents’ greatest concerns were that data sharing might make others less willing to enroll in clinical trials (37% very or somewhat concerned), that data would be used for marketing purposes (34%), or that data could be stolen (30%). Less concern was expressed about discrimination (22%) and exploitation of data for profit (20%).

Conclusions

In our study, few clinical trial participants had strong concerns about the risks of data sharing. Provided that adequate security safeguards were in place, most participants were willing to share their data for a wide range of uses. (Funded by the Greenwall Foundation.)

URL : https://www.nejm.org/doi/full/10.1056/NEJMsa1713258

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Data management and sharing in neuroimaging: Practices and perceptions of MRI researchers

Authors : John A. Borghi, Ana E. Van Gulick

Neuroimaging methods such as magnetic resonance imaging (MRI) involve complex data collection and analysis protocols, which necessitate the establishment of good research data management (RDM). Despite efforts within the field to address issues related to rigor and reproducibility, information about the RDM-related practices and perceptions of neuroimaging researchers remains largely anecdotal.

To inform such efforts, we conducted an online survey of active MRI researchers that covered a range of RDM-related topics. Survey questions addressed the type(s) of data collected, tools used for data storage, organization, and analysis, and the degree to which practices are defined and standardized within a research group.

Our results demonstrate that neuroimaging data is acquired in multifarious forms, transformed and analyzed using a wide variety of software tools, and that RDM practices and perceptions vary considerably both within and between research groups, with trainees reporting less consistency than faculty.

Ratings of the maturity of RDM practices from ad-hoc to refined were relatively high during the data collection and analysis phases of a project and significantly lower during the data sharing phase.

Perceptions of emerging practices including open access publishing and preregistration were largely positive, but demonstrated little adoption into current practice.

URL : Data management and sharing in neuroimaging: Practices and perceptions of MRI researchers

DOI : https://doi.org/10.1371/journal.pone.0200562

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Open and transparent research practices and public perceptions of the trustworthiness of agricultural biotechnology organizations

Authors : Asheley R. Landrum, Joseph Hilgard, Robert B. Lull, Heather Akin, Kathleen Hall Jamieson

Public trust in agricultural biotechnology organizations that produce so-called ‘genetically-modified organisms’ (GMOs) is affected by misinformed attacks on GM technology and worry that producers’ concern for profits overrides concern for the public good.

In an experiment, we found that reporting that the industry engages in open and transparent research practices increased the perceived trustworthiness of university and corporate organizations involved with GMOs.

Universities were considered more trustworthy than corporations overall, supporting prior findings in other technology domains.

The results suggest that commitment to, and communication of, open and transparent research practices should be part of the process of implementing agricultural biotechnologies.

URL : Open and transparent research practices and public perceptions of the trustworthiness of agricultural biotechnology organizations

DOI : https://doi.org/10.22323/2.17020204

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Comparing scientific and technological impact of biomedical research

Author : Qing Ke

Traditionally, the number of citations that a scholarly paper receives from other papers is used as the proxy of its scientific impact. Yet citations can come from domains outside the scientific community, and one such example is through patented technologies—paper can be cited by patents, achieving technological impact.

While the scientific impact of papers has been extensively studied, the technological aspect remains largely unknown. Here we aim to fill this gap by presenting a comparative study on how 919 thousand biomedical papers are cited by U.S. patents and by other papers over time.

We observe a positive correlation between citations from patents and from papers, but there is little overlap between the two domains in either the most cited papers, or papers with the most delayed recognition.

We also find that the two types of citations exhibit distinct temporal variations, with patent citations lagging behind paper citations for a median of 6 years for the majority of papers. Our work contributes to the understanding of the technological, and societal in general, impact of papers.

URL : https://arxiv.org/abs/1804.04105

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Authorial and institutional stratification in open access publishing: the case of global health research

Authors : Kyle Siler, Stefanie Haustein, Elise Smith, Vincent Larivière, Juan Pablo Alperin

Using a database of recent articles published in the field of Global Health research, we examine institutional sources of stratification in publishing access outcomes. Traditionally, the focus on inequality in scientific publishing has focused on prestige hierarchies in established print journals.

This project examines stratification in contemporary publishing with a particular focus on subscription vs. various Open Access (OA) publishing options.

Findings show that authors working at lower-ranked universities are more likely to publish in closed/paywalled outlets, and less likely to choose outlets that involve some sort of Article Processing Charge (APCs; gold or hybrid OA).

We also analyze institutional differences and stratification in the APC costs paid in various journals. Authors affiliated with higher-ranked institutions, as well as hospitals and non-profit organizations pay relatively higher APCs for gold and hybrid OA publications.

Results suggest that authors affiliated with high-ranked universities and well-funded institutions tend to have more resources to choose pay options with publishing. Our research suggests new professional hierarchies developing in contemporary publishing, where various OA publishing options are becoming increasingly prominent.

Just as there is stratification in institutional representation between different types of publishing access, there is also inequality within access types.

URL : Authorial and institutional stratification in open access publishing: the case of global health research

DOI : https://doi.org/10.7717/peerj.4269

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Data sharing and reanalysis of randomized controlled trials in leading biomedical journals with a full data sharing policy: survey of studies published in The BMJ and PLOS Medicine

Authors : Florian Naudet, Charlotte Sakarovitch, Perrine Janiaud, Ioana Cristea, Daniele Fanelli, David Moher, John P A Ioannidis

Objectives

To explore the effectiveness of data sharing by randomized controlled trials (RCTs) in journals with a full data sharing policy and to describe potential difficulties encountered in the process of performing reanalyses of the primary outcomes.

Design

Survey of published RCTs.

Setting

PubMed/Medline.

Eligibility criteria

RCTs that had been submitted and published by The BMJ and PLOS Medicine subsequent to the adoption of data sharing policies by these journals.

Main outcome measure

The primary outcome was data availability, defined as the eventual receipt of complete data with clear labelling. Primary outcomes were reanalyzed to assess to what extent studies were reproduced. Difficulties encountered were described.

Results

37 RCTs (21 from The BMJ and 16 from PLOS Medicine) published between 2013 and 2016 met the eligibility criteria. 17/37 (46%, 95% confidence interval 30% to 62%) satisfied the definition of data availability and 14 of the 17 (82%, 59% to 94%) were fully reproduced on all their primary outcomes. Of the remaining RCTs, errors were identified in two but reached similar conclusions and one paper did not provide enough information in the Methods section to reproduce the analyses. Difficulties identified included problems in contacting corresponding authors and lack of resources on their behalf in preparing the datasets. In addition, there was a range of different data sharing practices across study groups.

Conclusions

Data availability was not optimal in two journals with a strong policy for data sharing. When investigators shared data, most reanalyses largely reproduced the original results. Data sharing practices need to become more widespread and streamlined to allow meaningful reanalyses and reuse of data.