Pandemic events often trigger a surge of clinical trial activity aimed at rapidly evaluating therapeutic or preventative interventions. Ensuring rapid public access to the complete and unbiased trial record is particularly critical for pandemic research given the urgent associated public health needs. The World Health Organization (WHO) established standards requiring posting of results to a registry within 12 months of trial completion and publication in a peer reviewed journal within 24 months of completion, though compliance with these requirements among pandemic trials is unknown.
This cross-sectional analysis characterizes availability of results in trial registries and publications among registered trials performed during the 2009 H1N1 influenza, 2014 Ebola, and 2016 Zika pandemics. We searched trial registries to identify clinical trials testing interventions related to these pandemics, and determined the time elapsed between trial completion and availability of results in the registry. We also performed a comprehensive search of MEDLINE via PubMed, Google Scholar, and EMBASE to identify corresponding peer reviewed publications. The primary outcome was the compliance with either of the WHO’s established standards for sharing clinical trial results. Secondary outcomes included compliance with both standards, and assessing the time elapsed between trial completion and public availability of results.
Three hundred thirty-three trials met eligibility criteria, including 261 H1N1 influenza trials, 60 Ebola trials, and 12 Zika trials. Of these, 139 (42%) either had results available in the trial registry within 12 months of study completion or had results available in a peer-reviewed publication within 24 months. Five trials (2%) met both standards. No results were available in either a registry or publication for 59 trials (18%). Among trials with registered results, a median of 42 months (IQR 16–76 months) elapsed between trial completion and results posting. For published trials, the median elapsed time between completion and publication was 21 months (IQR 9–34 months). Results were available within 24 months of study completion in either the trial registry or a peer reviewed publication for 166 trials (50%).
Very few trials performed during prior pandemic events met established standards for the timely public dissemination of trial results.
“Another long-term trend that researchers are watching out for is the push for scientists to share their research data more openly. This was mandated by the biomedical funding charity, Wellcome, for research that it funded on COVID-19, although there have been instances of people circumventing the rules by making data available ‘upon request’.
In theory, the push for open data might lessen international collaboration if it is no longer necessary to establish personal relationships to access data. Sugimoto says this could happen, but also wonders whether open data might help to link researchers from across the world by making their work more visible. “It could actually, in some ways, enhance and increase international collaboration rather than diminish it,” she says….”
Abstract: This article analyzes the role of copyright doctrine and case law in preserving the institutional function of libraries—both on- and offline—as trusted and, in principle, neutral hubs equalizing access to credible information and knowledge in societies with structural inequalities. In doing so it examines the ongoing Hachette v. Internet Archive litigation before the US District Court of the Southern District of New York in the context of earlier copyright cases, finding that there is a persistent need for electronic access to library material online.
Libraries have traditionally served an important role as reserved spaces for legally permissible distribution of books outside of markets. Copyright law, however, has the potential to hinder the fuction of libraries and other cultural heritage institutions particularly in equalizing access to knowledge. While there exist some exceptions and limitations that partially alleviate this, their applicability in the digital environment is still contested. Two novel challenges are interfering: first, an unmet and contentious need for emergency access to electronic library material to be granted online, and second, the need to counteract historical biases and misinformation, both of which multiply when spread within a hyper-connected and digitized society. In order to ensure electronic access to credible information and knowledge, policymakers must address these challenges strategically and reassess the needs of subjects and institutions that are currently subject to copyright exceptions.
Hachette v. Internet Archive follows a string of copyright cases that involved challenges to digitization without permission and to providing electronic access to digitized library material. The plaintiffs in Hachette v. Internet Archive, four publishers, brought copyright claims against the Internet Archive for the latter’s operation of a “National Emergency Library” within the context of the COVID-19 pandemic. The case introduces a new dimension to existing debates around electronic access to library material, particularly around e-lending, raising the question: Can emergencies justify additional exceptions to copyright laws covering electronic access to library material, and if so, under what circumstances?
After analyzing the relevant settled case law and the ongoing litigation against the Internet Archive and then looking back into the history of and rationale for copyright laws, the article advances a normative claim—that copyright should provide better support to libraries and digital libraries in particular (broadly defined) as the institutional safeguards of our literary treasures. Libraries have a public service mandate to preserve, curate, and provide access to a plurality of original and authoritative sources, and thus ultimately aspire not to compete in the marketplace but to become trusted hubs that equalize access to knowledge. In the context of a society currently struggling to fight historical biases and (online) misinformation, providing libraries with the legal support needed to fulfill this mandate will enable them to more effectively safeguard and provide equal access to (at least relatively) credible information and knowledge, including in the digital environment.
“On June 1, 2020, four publishing houses, Hachette Book Group, Inc., HarperCollins Publishers LLC, John Wiley & Sons, Inc., and Penguin Random House LLC, filed before the US District Court for the Southern District of New York a copyright infringement action against the Internet Archive for the Archive’s operation of what it called a “National Emergency Library” (NEL) after the first US shelter-in-place orders in response to the COVID-19 pandemic. Indeed, on March 24, 2020, the Internet Archive had announced the launch of a temporary online NEL to support “emergency remote teaching, research activities, independent scholarship, and intellectual stimulation while universities, schools, training centers, and libraries were closed due to COVID-19.” In their announcement the Archive called on authors and publishers to support the effort, which would ensure “temporary access to their work in this time of crisis.” It provided an opt-in option for authors who wanted to donate their book(s) to the NEL, and an opt-out option for authors who wanted to remove their book(s) from the NEL….
In my recent article, A Public Service Role for Digital Libraries: The Unequal Battle Against (Online) Misinformation Through Copyright Law Reform and the Emergency Electronic Access to Library Material (forthcoming, 31 Cornell J.L.& Pub. Pol’y_ _ (2021)), I examine the ongoing Hachette v. Internet Archive litigation, placing it in the context of earlier US copyright case law that deals with the digitization or the making available of copyrighted works for educational, research, and other purposes (notably: Authors Guild v. Google, Authors Guild v. HathiTrust, and Cambridge University Press v. Becker). There is also a global debate focusing on similar issues, apparent, for example, in similar cases brought before courts in Europe (Technische Universität Darmstadt v. Eugen Ulmer KG and Vereniging Openbare Bibliotheken v. Stichting Leenrech), India (University of Oxford v. Rameshwari Photocopy Service), and Canada (CCH Canadian Ltd v. Law Society of Upper Canada and the recent York University v. Access Copyright)….”
Abstract: The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic will be remembered as one of the defining events of the 21st century. The rapid global outbreak has had significant impacts on human society and is already responsible for millions of deaths. Understanding and tackling the impact of the virus has required a worldwide mobilisation and coordination of scientific research. The COVID-19 Data Portal (https://www.covid19dataportal.org/) was first released as part of the European COVID-19 Data Platform, on April 20th 2020 to facilitate rapid and open data sharing and analysis, to accelerate global SARS-CoV-2 and COVID-19 research. The COVID-19 Data Portal has fortnightly feature releases to continue to add new data types, search options, visualisations and improvements based on user feedback and research. The open datasets and intuitive suite of search, identification and download services, represent a truly FAIR (Findable, Accessible, Interoperable and Reusable) resource that enables researchers to easily identify and quickly obtain the key datasets needed for their COVID-19 research.
Abstract: Despite the development of various technologies and systems using artificial intelligence (AI) to solve problems related to disasters, difficult challenges are still being encountered. Data are the foundation to solving diverse disaster problems using AI, big data analysis, and so on. Therefore, we must focus on these various data. Disaster data depend on the domain by disaster type and include heterogeneous data and lack interoperability. In particular, in the case of open data related to disasters, there are several issues, where the source and format of data are different because various data are collected by different organizations. Moreover, the vocabularies used for each domain are inconsistent. This study proposes a knowledge graph to resolve the heterogeneity among various disaster data and provide interoperability among domains. Among disaster domains, we describe the knowledge graph for flooding disasters using Korean open datasets and cross-domain knowledge graphs. Furthermore, the proposed knowledge graph is used to assist, solve, and manage disaster problems.
“A recent study showed that 67.2 percent of misinformation in India involves health-related topics, such as falsehoods on the COVID-19 vaccine, other forms of medical treatments, medical institutions, and healthcare facilities.
The same study also found that online media was responsible for higher volumes of inaccurate news (94.4 percent) in comparison with mainstream media (5.6 percent), with false claims being distributed mainly on social media platforms.
To address this problem, Elsevier, a global information and analytics business, launched its India COVID-19 Healthcare Hub for frontline healthcare workers and members of the public in India. It offers the latest evidence-based information along with information on the management and prevention of the virus, thereby limiting the spread of misinformation….”
Abstract: During the previous Ebola and Zika outbreaks, researchers shared their data, allowing many published epidemiological studies to be produced only from open research data, to speed up investigations and control of these infections. This study aims to evaluate the dissemination of the COVID-19 research data underlying scientific publications. Analysis of COVID-19 publications from December 1, 2019, to April 30, 2020, was conducted through the PubMed Central repository to evaluate the research data available through its publication as supplementary material or deposited in repositories. The PubMed Central search generated 5,905 records, of which 804 papers included complementary research data, especially as supplementary material (77.4%). The most productive journals were The New England Journal of Medicine, The Lancet and The Lancet Infectious Diseases, the most frequent keyword was pneumonia, and the most used repositories were GitHub and GenBank. An expected growth in the number of published articles following the course of the pandemics is confirmed in this work, while the underlying research data are only 13.6%. It can be deduced that data sharing is not a common practice, even in health emergencies, such as the present one. High-impact generalist journals have accounted for a large share of global publishing. The topics most often covered are related to epidemiological and public health concepts, genetics, virology and respiratory diseases, such as pneumonia. However, it is essential to interpret these data with caution following the evolution of publications and their funding in the coming months.
From the body of the paper: “In global public health emergencies, it should be mandatory to disseminate any information that may be of value in fighting the crisis. For this to be done efficiently, there is a need to develop agreed global standards for sharing data and results for scientists, institutions and governments.”
“Fleming, scholarly communications librarian and coordinator of the UTC Library Affordable Course Materials Initiative, says those thoughts and actions evolved beyond ensuring internet access. A growing number of faculty were committed to making class resources and necessities more accessible to all students.
She says faculty are now more committed to finding ways to get students the best, most affordable resources. “We had a huge increase in interest that’s persisted about creating affordable materials for students,” Fleming adds. …”
SMILE is a free online access medical education (FOAMEd) platform created by two UK surgical trainees and a medical student that delivered over 200 medical lectures during lockdown.
The role of Social Media in the development of SMILE was interrogated using a survey sent to all SMILE participants and by analysing activity on SMILE social media platforms.
1306 students responded to the online survey with 57.2% saying they heard of SMILE through Facebook. Engagement using facebook remained highest with 13,819 members, over 800 user comments and >16,000 user reactions.
4% of the students heard of SMILE through Twitter or Instagram.
Facebook analytics revealed the highest level of traffic when lectures were most commonly held suggesting students used Facebook to access lectures.
Other educators were able to find SMILE on social media, leading to collaborations with other platforms.
Throughout the survey many mentioned how social media created and maintained a community of medical students enhancing group-based learning
We demonstrate that social media platforms provide popular and cost-effective methods to promote, sustain & deliver medical education for students and educators.