Towards a culture of open science and data sharing in health and medical research

Author : Anisa Rowhani-Farid

This thesis investigated the factors that contribute to the cultural shift towards open science and data sharing in health and medical research, with a focus on the role health and medical journals play.

The findings of this research demonstrate that journal data sharing policies are not effective and that journals do not currently provide incentives for sharing.

This study contributed to the movement towards more reproducible research by providing empirical evidence for the strengthening of journal data sharing policies and the adoption of an incentive for open research.

DOI : https://doi.org/10.5204/thesis.eprints.119697

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

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

The Changing Influence of Journal Data Sharing Policies on Local RDM Practices

Authors : Dylanne Dearborn, Steve Marks, Leanne Trimble

The purpose of this study was to examine changes in research data deposit policies of highly ranked journals in the physical and applied sciences between 2014 and 2016, as well as to develop an approach to examining the institutional impact of deposit requirements.

Policies from the top ten journals (ranked by impact factor from the Journal Citation Reports) were examined in 2014 and again in 2016 in order to determine if data deposits were required or recommended, and which methods of deposit were listed as options.

For all 2016 journals with a required data deposit policy, publication information (2009-2015) for the University of Toronto was pulled from Scopus and departmental affiliation was determined for each article.

The results showed that the number of high-impact journals in the physical and applied sciences requiring data deposit is growing. In 2014, 71.2% of journals had no policy, 14.7% had a recommended policy, and 13.9% had a required policy (n=836).

In contrast, in 2016, there were 58.5% with no policy, 19.4% with a recommended policy, and 22.0% with a required policy (n=880). It was also evident that U of T chemistry researchers are by far the most heavily affected by these journal data deposit requirements, having published 543 publications, representing 32.7% of all publications in the titles requiring data deposit in 2016.

The Python scripts used to retrieve institutional publications based on a list of ISSNs have been released on GitHub so that other institutions can conduct similar research.

URL : The Changing Influence of Journal Data Sharing Policies on Local RDM Practices

DOI : https://doi.org/10.2218/ijdc.v12i2.583

Data sharing in PLOS ONE: An analysis of Data Availability Statements

Authors : Lisa M. Federer, Christopher W. Belter, Douglas J. Joubert, Alicia Livinski, Ya-Ling Lu, Lissa N. Snyders, Holly Thompson

A number of publishers and funders, including PLOS, have recently adopted policies requiring researchers to share the data underlying their results and publications. Such policies help increase the reproducibility of the published literature, as well as make a larger body of data available for reuse and re-analysis.

In this study, we evaluate the extent to which authors have complied with this policy by analyzing Data Availability Statements from 47,593 papers published in PLOS ONE between March 2014 (when the policy went into effect) and May 2016.

Our analysis shows that compliance with the policy has increased, with a significant decline over time in papers that did not include a Data Availability Statement. However, only about 20% of statements indicate that data are deposited in a repository, which the PLOS policy states is the preferred method.

More commonly, authors state that their data are in the paper itself or in the supplemental information, though it is unclear whether these data meet the level of sharing required in the PLOS policy.

These findings suggest that additional review of Data Availability Statements or more stringent policies may be needed to increase data sharing.

URL : Data sharing in PLOS ONE: An analysis of Data Availability Statements

DOI : https://doi.org/10.1371/journal.pone.0194768

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.

 

Attitudes and norms affecting scientists’ data reuse

Authors : Renata Gonçalves Curty, Kevin Crowston, Alison Specht, Bruce W. Grant, Elizabeth D. Dalton

The value of sharing scientific research data is widely appreciated, but factors that hinder or prompt the reuse of data remain poorly understood. Using the Theory of Reasoned Action, we test the relationship between the beliefs and attitudes of scientists towards data reuse, and their self-reported data reuse behaviour.

To do so, we used existing responses to selected questions from a worldwide survey of scientists developed and administered by the DataONE Usability and Assessment Working Group (thus practicing data reuse ourselves).

Results show that the perceived efficacy and efficiency of data reuse are strong predictors of reuse behaviour, and that the perceived importance of data reuse corresponds to greater reuse. Expressed lack of trust in existing data and perceived norms against data reuse were not found to be major impediments for reuse contrary to our expectations.

We found that reported use of models and remotely-sensed data was associated with greater reuse. The results suggest that data reuse would be encouraged and normalized by demonstration of its value.

We offer some theoretical and practical suggestions that could help to legitimize investment and policies in favor of data sharing.

URL : Attitudes and norms affecting scientists’ data reuse

DOI : https://doi.org/10.1371/journal.pone.0189288