Patients at the Heart of the Scientific Dialogue: An Industry Perspective | SpringerLink

“Pharmaceutical companies need to regularly communicate to patients all essential information about their medicines, especially data from the research studies that were conducted to evaluate the medicine’s benefits and risks. To do that, companies will need to make sure patients have access to and awareness of relevant information. This can be achieved by ensuring medical information is freely available to the reader, and working with publishers to facilitate open access (free) publications. Companies should also help improve patients’ understanding of medical terminology, offer simplified versions of scientific content, and deliver information through various formats (print versus digital, text versus audio versus video) to address different learning styles and literacy levels. This will empower patients with knowledge and improve shared decision-making. It will also be essential for pharmaceutical companies to involve patients in various stages of medicine development, such as getting their input on how the research studies for investigating these medicines are designed and reported to ensure relevant information to patients are well-captured and clear. This should also go in parallel with providing opportunities to elevate the patient voice through patient-partnered research and authorship on topics particularly relevant to them.”


Researcher and Academic Library Roles and User Beliefs in the Pandemic: Designing the Open-Access and Library Usage Scale (OALU) | DeZouche | Journal of Intellectual Freedom & Privacy

Abstract:  We investigated whether individuals believe they have a right to information during a crisis, and whether attitudes about crisis-related information sharing differ by age and one’s role in providing or consuming information. We measured attitudes about aspects of data sharing related to COVID-19: researchers’ obligation to share data, publishers’ obligation to share information, and libraries’ responsibility to provide them. We predicted younger individuals, especially students as consumers of information, would report stronger preference for open access to pandemic-related information. A principal components analysis was performed, and two predicted factors emerged: information-sharing obligations and libraries’ responsibility to provide resources. Age was not significantly correlated with attitudes about libraries or information-sharing. Planned analyses comparing students, faculty, and community members unaffiliated with the university revealed no differences in their attitudes regarding library resources or information-sharing. A lack of age and university affiliation-related differences can be explained by universally strong attitudes in favor of both information-sharing and library resources, with a greater desire for information-sharing. Knowing that individuals demonstrate a strong preference for open access to information and that these attitudes do not differ between those who are providing (faculty), and consuming information (students/community) can contribute to funding for these resources. This research is innovative and timely, as attitudes about access when information is urgently and globally needed, as during a pandemic, is likely to differ from those observed under different circumstances.


Open science is in the interest of all professionals |

“Open science is in the interest of all professionals working in epilepsy care and patients. At the same time, we do have some challenges with open science within our field. For example, it clashes with patient-related data that cannot be shared due to privacy laws, and sometimes also with the interests of entrepreneurs who supply institutions with equipment/software.

We chose because it offers full professional support in making both new issues and the Epilepsie archive open access. We are proud that, as the Nederlandse Liga tegen Epilepsie, we are now using the most widely used open source publishing platform for scientific journals.”

Community consensus on core open science practices to monitor in biomedicine | PLOS Biology

Abstract:  The state of open science needs to be monitored to track changes over time and identify areas to create interventions to drive improvements. In order to monitor open science practices, they first need to be well defined and operationalized. To reach consensus on what open science practices to monitor at biomedical research institutions, we conducted a modified 3-round Delphi study. Participants were research administrators, researchers, specialists in dedicated open science roles, and librarians. In rounds 1 and 2, participants completed an online survey evaluating a set of potential open science practices, and for round 3, we hosted two half-day virtual meetings to discuss and vote on items that had not reached consensus. Ultimately, participants reached consensus on 19 open science practices. This core set of open science practices will form the foundation for institutional dashboards and may also be of value for the development of policy, education, and interventions.


The future of global health research, publishing, and practice – The Lancet Global Health

“As we move into our tenth year of operation, we would like to build on our commitment to making global health research, publishing, and practice a more equitable and effective space. We are therefore effecting a number of initiatives. Before outlining them, however, a word on article processing charges. It is often brought to our attention that the fee that we charge to cover the cost of reviewing, technical editing, typesetting and graphics, online hosting, archiving, and promotion of accepted manuscripts is way beyond the reach of researchers from low-income and middle-income countries (LMICs). We want to emphasise that we never, ever, expect researchers from any country to pay this charge from their own pockets. Our business model is based on the premise that more and more research funders are mandating gold open-access publication and are prepared to pay for it. If there is no such funding available and no, or only partial, funding available from institutional sources, then we waive or discount the fee. Whether the fee is paid or not does not affect the open-access nature of the article….”

An iterative and interdisciplinary categorisation process towards FAIRer digital resources for sensitive life-sciences data | Scientific Reports

Abstract:  For life science infrastructures, sensitive data generate an additional layer of complexity. Cross-domain categorisation and discovery of digital resources related to sensitive data presents major interoperability challenges. To support this FAIRification process, a toolbox demonstrator aiming at support for discovery of digital objects related to sensitive data (e.g., regulations, guidelines, best practice, tools) has been developed. The toolbox is based upon a categorisation system developed and harmonised across a cluster of 6 life science research infrastructures. Three different versions were built, tested by subsequent pilot studies, finally leading to a system with 7 main categories (sensitive data type, resource type, research field, data type, stage in data sharing life cycle, geographical scope, specific topics). 109 resources attached with the tags in pilot study 3 were used as the initial content for the toolbox demonstrator, a software tool allowing searching of digital objects linked to sensitive data with filtering based upon the categorisation system. Important next steps are a broad evaluation of the usability and user-friendliness of the toolbox, extension to more resources, broader adoption by different life-science communities, and a long-term vision for maintenance and sustainability.


Opinion: Why we’re becoming a Digital Public Good — and why we aren’t | Devex

“A few months ago, Medtronic LABS made the decision to open source our digital health platform SPICE, and pursue certification as a Digital Public Good. DPGs are defined by the Digital Public Good Alliance as: “Open-source software, open data, open AI models, open standards, and open content that adhere to privacy and other applicable laws and best practices, do no harm by design, and help attain the Sustainable Development Goals.” The growing momentum around DPGs in global health is relatively new, coinciding with the launch of the U.N. Secretary General’s Roadmap for Digital Cooperation in 2020. The movement aims to put governments in the driver’s seat, promote better collaboration among development partners, and reduce barriers to the digitization of health systems.”

Toward open and reproducible epidemiology | American Journal of Epidemiology | Oxford Academic

Abstract:  Starting in the 2010s, researchers in the experimental social sciences rapidly began to adopt increasingly open and reproducible scientific practices. These practices include publicly sharing deidentified data when possible, sharing analysis code, and preregistering study protocols. Empirical evidence from the social sciences suggests such practices are feasible, can improve analytic reproducibility, and can reduce selective reporting. In academic epidemiology, adoption of open-science practices has been slower than in the social sciences (with some notable exceptions, such as registering clinical trials). Epidemiologic studies are often large, complex, conceived after data have already been collected, and difficult to directly replicate by collecting new data. These characteristics makes it especially important to ensure their integrity and analytic reproducibility. Open-science practices can also pay immediate dividends to researchers’ own work by clarifying scientific reasoning and encouraging well-documented, organized workflows. We consider how established epidemiologists and early-career researchers alike can help midwife a culture of open science in epidemiology through their research practices, mentorship, and editorial activities.


Author support and a high-quality publishing experience – The Journal of Thoracic and Cardiovascular Surgery

“In response to this shifting landscape [toward OA], we aim to position the AATS [American Association of Thoracic Surgery] journals to take advantage of opportunities presented by open access publication. We are working to develop a portfolio strategy that uses the strengths of the journal program as a whole and increases the amount of high-quality surgical information published across the AATS journals. We strive to offer a robust publishing program with editorial policies that support our authors and ensure a high-quality author experience.”

Introducing Jot — a new open-source tool that help researchers with journal selection < Yale School of Public Health

“Say hello to Jot: a free, open-source web application that matches manuscripts in the fields of biomedicine and life sciences with suitable journals, based on a manuscript’s title, abstract, and (optionally) citations.

Developed by the Townsend Lab at the Yale School of Public Health, Jot gathers a wealth of data on journal quality, impact, fit, and open access options that can be explored through a dashboard of linked, interactive visualizations….”

NIMH » NIMH Creates Publicly Accessible Resource With Data From Healthy Volunteers

“Studying healthy people can help researchers understand how the brain works in states of health and illness. Although many mental health studies include healthy participants as a comparison group, these studies typically focus on selected measures relevant to a certain functional domain or specific mental illness. The Healthy Research Volunteer Study at the National Institute of Mental Health aims to build a comprehensive, publicly accessible resource with a range of brain and behavioral data from healthy volunteers.

This resource aims to shed light on basic questions about brain function and translational questions about the relationship between brain and behavior. Although the study focuses on healthy volunteers, the data also have relevance to clinical questions about neurobiological, cognitive, and emotional processes associated with certain mental illnesses.

The NIMH Healthy Research Volunteer Study is unique in the breadth and depth of its measures. All data collected as part of the study are anonymized and shared with the research community via the OpenNeuro repository….”

Preprints als Informationsquelle besser nutzbar machen – TH Köln

From Google’s English:  “In the project PIXLS – Preprint Information eXtraction for Life Sciences, TH Köln and ZB MED will develop an application over the next three years that automatically opens up the preprint server. This enables the research community to make better use of current information that was published on preprint servers – and therefore hardly appears in classic detection and search systems.

The German Research Foundation (DFG) is funding the project as part of the e-Research Technologies framework programme.”

FAIR service investigation survey

“The FAIR principles and “making data FAIR” have become common buzzwords in the biomedical field in recent years. Many organizations are striving to create fully FAIR data or to FAIRify existing data. In that process they often find themselves hindered by a range of challenges. To address those challenges, the FAIRplus consortium and other organizations have developed FAIR products and services in recent years. Now the question is: what is the need for new FAIR services or for improvement of the existing ones, in order to better serve life science organizations in their quest to accelerate biomedical research? To answer this, The Hyve run a survey to collect experience with the FAIR principles, main challenges and the products or services that help (or might have helped) to overcome those challenges….”

Open access and predatory publishing: a survey of the publishing practices of academic pharmacists and nurses in the United States | Journal of the Medical Library Association

Abstract:  Objective: Academics are under great pressure to publish their research, the rewards for which are well known (tenure, promotion, grant funding, professional prestige). As open access publishing gains acceptance as a publishing option, researchers may choose a “predatory publisher.” The purpose of this study is to investigate the motivations and rationale of pharmacy and nursing academics in the United States to publish in open access journals that may be considered “predatory.”

Methods: A 26-item questionnaire was programmed in Qualtrics and distributed electronically to approximately 4,500 academic pharmacists and nurses, 347 of whom completed questionnaires (~8%). Pairwise correlations were performed followed by a logistic regression to evaluate statistical associations between participant characteristics and whether participants had ever paid an article processing fee (APF).

Results: Participants who had published more articles, were more familiar with predatory publishing, and who were more concerned about research metrics and tenure were more likely to have published in open access journals. Moderate to high institutional research intensity has an impact on the likelihood of publishing open access. The majority of participants who acknowledged they had published in a predatory journal took no action after realizing the journal was predatory and reported no negative impact on their career for having done so.

Conclusion The results of this study provide data and insight into publication decisions made by pharmacy and nursing academics. Gaining a better understanding of who publishes in predatory journals and why can help address the problems associated with predatory publishing at the root.

The evolving role of research ethics committees in the era of open data | South African Journal of Bioethics and Law

Abstract:  While open science gains prominence in South Africa with the encouragement of open data sharing for research purposes, there are stricter laws and regulations around privacy – and specifically the use, management and transfer of personal information – to consider. The Protection of Personal Information Act No. 4 of 2013 (POPIA), which came into effect in 2021, established stringent requirements for the processing of personal information and has changed the regulatory landscape for the transfer of personal information across South African borders. At the same time, draft national policies on open science encourage wide accessibility to data and open data sharing in line with international best practice. As a result, the operation of research ethics committees (RECs) in South Africa is affected by the conflicting demands of the shift towards open science on the one hand, and the stricter laws protecting participants’ personal information and the transfer thereof, on the other. This article explores the continuing evolving role of RECs in the era of open data and recommends the development of a data transfer agreement (DTA) for the ethical management of personal health information, considering the challenges that RECs encounter, which centres predominantly on privacy, data sharing and access concerns following advances in genetic and genomic research and biobanking.