biomedical research – InfoDoc MicroVeille

Sharing health research data – the role of funders in improving the impact

Authors : Robert F. Terry, Katherine Littler, Piero L. Olliaro

Recent public health emergencies with outbreaks of influenza, Ebola and Zika revealed that the mechanisms for sharing research data are neither being used, or adequate for the purpose, particularly where data needs to be shared rapidly.

A review of research papers, including completed clinical trials related to priority pathogens, found only 31% (98 out of 319 published papers, excluding case studies) provided access to all the data underlying the paper – 65% of these papers give no information on how to find or access the data.

Only two clinical trials out of 58 on interventions for WHO priority pathogens provided any link in their registry entry to the background data.

Interviews with researchers revealed a reluctance to share data included a lack of confidence in the utility of the data; an absence of academic-incentives for rapid dissemination that prevents subsequent publication and a disconnect between those who are collecting the data and those who wish to use it quickly.

The role of the funders of research needs to change to address this. Funders need to engage early with the researchers and related stakeholders to understand their concerns and work harder to define the more explicitly the benefits to all stakeholders.

Secondly, there needs to be a direct benefit to sharing data that is directly relevant to those people that collect and curate the data.

Thirdly more work needs to be done to realise the intent of making data sharing resources more equitable, ethical and efficient.

Finally, a checklist of the issues that need to be addressed when designing new or revising existing data sharing resources should be created. This checklist would highlight the technical, cultural and ethical issues that need to be considered and point to examples of emerging good practice that can be used to address them.

URL : Sharing health research data – the role of funders in improving the impact

DOI : http://dx.doi.org/10.12688/f1000research.16523.1

Nanopublications: A Growing Resource of Provenance-Centric Scientific Linked Data

Authors : Tobias Kuhn, Albert Meroño-Peñuela, Alexander Malic, Jorrit H. Poelen, Allen H. Hurlbert, Emilio Centeno Ortiz, Laura I. Furlong, Núria Queralt-Rosinach, Christine Chichester, Juan M. Banda, Egon Willighagen, Friederike Ehrhart, Chris Evelo, Tareq B. Malas, Michel Dumontier

Nanopublications are a Linked Data format for scholarly data publishing that has received considerable uptake in the last few years. In contrast to the common Linked Data publishing practice, nanopublications work at the granular level of atomic information snippets and provide a consistent container format to attach provenance and metadata at this atomic level.

While the nanopublications format is domain-independent, the datasets that have become available in this format are mostly from Life Science domains, including data about diseases, genes, proteins, drugs, biological pathways, and biotic interactions.

More than 10 million such nanopublications have been published, which now form a valuable resource for studies on the domain level of the given Life Science domains as well as on the more technical levels of provenance modeling and heterogeneous Linked Data.

We provide here an overview of this combined nanopublication dataset, show the results of some overarching analyses, and describe how it can be accessed and queried.

URL : https://arxiv.org/abs/1809.06532

Open Access E-Books in the Field of Health Sciences: A Scientometric Study

Authors : Fayaz Ahmad Loan, Ufaira Yaseen Shah

The Directory of Open Access Books (DOAB) is a discovery service for open access e-books. It provides a searchable index to peer-reviewed e-books published under an open access business model.

The present study aims to assess the scientometric trends of the open access e-books in the field of the Health Sciences available through the Directory of Open Access Books. In order to fulfil the set objectives, the relevant details of the Health Sciences e-books were collected.

The results reveal that 916 e-books are available in the field of the Health Sciences through the Directory of Open Access. The highest number of e-books is contributed in General Medicine (40.61%, 372) and in the English language (83.84%, 768). These e-books also contain current information as the majority (88.32%, 809) of these are published from 2011 onwards by the reputed publishers like Frontiers Media, SciELO, Springer, Palgrave Macmillan, and Oxford University Press etc.

The Directory of Open Access Books was selected as a source for data collection whereas the Health Sciences was selected as the field of study. Therefore, the finding can’t be generalised across directories and subjects.

URL : Open Access E-Books in the Field of Health Sciences: A Scientometric Study

Alternative location : https://ijism.ricest.ac.ir/index.php/ijism/article/view/1272

Post-publication peer review in biomedical journals: overcoming obstacles and disincentives to knowledge sharing

Authors : Valerie Matarese, Karen Shashok

The importance of post-publication peer review (PPPR) as a type of knowledge exchange has been emphasized by several authorities in research publishing, yet biomedical journals do not always facilitate this type of publication.

Here we report our experience publishing a commentary intended to offer constructive feedback on a previously published article. We found that publishing our comment required more time and effort than foreseen, because of obstacles encountered at some journals.

Using our professional experience as authors’ editors and our knowledge of publication policies as a starting point, we reflect on the probable reasons behind these obstacles, and suggest ways in which journals could make PPPR easier. In addition, we argue that PPPR should be more explicitly valued and rewarded in biomedical disciplines, and suggest how these publications could be included in research evaluations.

Eliminating obstacles and disincentives to PPPR is essential in light of the key roles of post-publication analysis and commentary in drawing attention to shortcomings in published articles that were overlooked during pre-publication peer review.

URL : Post-publication peer review in biomedical journals: overcoming obstacles and disincentives to knowledge sharing

DOI : https://dx.doi.org/10.31229/osf.io/8kxyz

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

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