Open science and data sharing in trauma research: Developing a trauma-informed protocol for archiving sensitive qualitative data. – PsycNET

Abstract:  Objective: The open science movement seeks to make research more transparent, and to that end, researchers are increasingly expected or required to archive their data in national repositories. In qualitative trauma research, data sharing could compromise participants’ safety, privacy, and confidentiality because narrative data can be more difficult to de-identify fully. There is little guidance in the traumatology literature regarding how to discuss data-sharing requirements with participants during the informed consent process. Within a larger research project in which we interviewed assault survivors, we developed and evaluated a protocol for informed consent for qualitative data sharing and engaging participants in data de-identification. Method: We conducted qualitative interviews with N = 32 adult sexual assault survivors regarding (a) how to conduct informed consent for data sharing, (b) whether participants should have input on sharing their data, and (c) whether they wanted to redact information from their transcripts prior to archiving. Results: No potential participants declined participation after learning about the archiving mandate. Survivors indicated that they wanted input on archiving because the interview is their story of trauma and abuse and it would be disempowering not to have control over how this information was shared and disseminated. Survivors also wanted input on this process to help guard their privacy, confidentiality, and safety. None of the participants elected to redact substantive data prior to archiving. Conclusions: Engaging participants in the archiving process is a feasible practice that is important and empowering for trauma survivors. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

A Possible Fix For Scientific (and Academic) Publishing | Peer Review – News and Blog

“This is a proposal for a software platform that may help the academic community solve these problems, and more….

Peer Review [the proposed platform] allows scholars, scientists, academics, and researchers to self organize their own peer review and refereeing, without needing journal editors to manually mediate it. The platform allows review and refereeing to be crowdsourced, using a reputation system tied to academic fields to determine who should be able to offer review and to referee.

The platform splits pre-publish peer review from post-publish refereeing. Pre-publish review then becomes completely about helping authors polish their work and decide if their articles are ready to publish. Refereeing happens post-publish, and in a way which is easily understandable to the lay reader, helping the general public sort solid studies from shakey ones.

 

Peer Review is being developed open source. The hope is to form a non-profit to develop it which would be governed by the community of academics who use the platform in collaboration with the team of software professionals who build it (a multi-stakeholder cooperative)….”

Public use and public funding of science | Nature Human Behaviour

Abstract:  Knowledge of how science is consumed in public domains is essential for understanding the role of science in human society. Here we examine public use and public funding of science by linking tens of millions of scientific publications from all scientific fields to their upstream funding support and downstream public uses across three public domains—government documents, news media and marketplace invention. We find that different public domains draw from various scientific fields in specialized ways, showing diverse patterns of use. Yet, amidst these differences, we find two important forms of alignment. First, we find universal alignment between what the public consumes and what is highly impactful within science. Second, a field’s public funding is strikingly aligned with the field’s collective public use. Overall, public uses of science present a rich landscape of specialized consumption, yet, collectively, science and society interface with remarkable alignment between scientific use, public use and funding.

 

Helen Salisbury: Unintended consequences of open access to medical notes | The BMJ

“Patients now have access to their own medical notes, which is surely progress. More patients are now taking advantage of the ability to view all of the coded information in their GP record online—and this November they’ll have access to all of the free text written in the consultation from that date onwards….

But there are unintended consequences. One is the increased demand for explanations….

As junior doctors, we learn that everything we write in a patient’s notes may potentially be read by them and that we should be polite and objective, backing up opinions with evidence. I may note mismatches between symptoms and signs when my patient who says that she’s fine has nevertheless objectively lost weight, or when the child with dreadful tummy ache clambers energetically onto my couch to be examined. In the past only a handful of patients ever asked to read their notes, but many GPs will have experienced protracted conversations with patients who were unhappy with the contents. In the future, when patients have routine access to everything we write, I fear that I may have to spend more time explaining my record of the consultation….

More fundamentally, if there’s a high likelihood that all notes will be viewed online, will GPs stop noting their “soft concerns” that are so vital in both child and adult safeguarding?…”

Accelerating Social Impact Research: Libraries at the Intersection of Openness and Community-Engaged Scholarship

“The social impact of research, whether it is examining educational and economic disparities, developing new medications, or understanding environmental challenges, is a developing, but key, component of higher education and research institutions. Critical to accelerating this impact and advancing public good is the broad adoption of open research principles and practices, which have been shown to benefit the individual researcher through increased citations and scholarly impact, to spur scientific advancements, and to provide more equitable access to research and a deep commitment and engagement with the local community or the communities that are engaged in or using the research. As educators and stewards of the scholarly and scientific record, research libraries have a significant interest in accelerating open research and scholarship within their institutions, and are ideally situated to support the institutional mission to serve the public and their communities. Within higher education, research library leaders have a unique position on campus, supporting every discipline with services, expertise, collections, and infrastructure. To move forward together, ARL piloted a six-month cohort program for members to accelerate the adoption and implementation of open science principles at the intersection of social impact of research and scholarship….”

FIU launches open-access Forensic Research Library | FIU News – Florida International University

“Florida International University (FIU) has launched a first-of-its-kind resource for forensic science practitioners, students, researchers, and the general public. The Research Forensic Library provides access to thousands of articles and reports in the scientific literature, a critical step in the forward momentum required of forensic science and its varied applications.

 
From daily digest emails to curated search results, the Research Forensic Library provides easy, online accessibility to material covering all disciplines of the forensic sciences. The library is part of Global Forensic and Justice Center (GFJC), an FIU program with a focus on innovation from the crime scene to the courtroom.
 
A cooperative agreement with the National Institute of Justice (NIJ) awarded FIU $300,000 for three years to assist in the creation and curation of the Research Forensic Library. NIJ is the research, development, and evaluation agency of the U.S. Department of Justice seeking to improve the quality and efficiency of forensic practice in the U.S., particularly at the state and local levels. The Research Forensic Library’s public accessibility exemplifies a key pillar of NIJ’s mission….”

Profiteure von Open Access außerhalb der Wissenschaft oder: Warum ist Open Access auch als Arbeitsfeld für öffentliche Bibliotheken interessant? · WissKom2022: Wie macht ihr das? – Öffentliche und wissenschaftliche Bibliotheken im Dialog

From Google’s English:  Abstract:  “Open Access” is primarily understood as a field of work for academic libraries, since the first definitions – such as those of the Budapest Open Access Initiative – are aimed at academic, peer-reviewed literature. At the latest with the emergence of activities on Open Science and the transfer of opening to the entire research cycle, including the inclusion of stakeholder groups outside of science (keyword: “Citizen Science”), it is becoming increasingly clear that the circle of those who benefit from Open Access benefit, are not only to be found in research and in related areas. The article shows the main actors who also benefit from free access to scientific literature outside of science. Subsequently, possible fields of work are reflected and initial discussion impulses are given as to the extent to which “Open Access” can also be a field of work for public libraries.

How to disseminate clinical research – Charlesworth – – Anaesthesia – Wiley Online Library

“Gold Open Access under a Creative Commons licence is arguably a major way in which you can increase the reach of your work because most clinicians or patients cannot access paywalled content. If you submit to a subscription publisher, you will have the option of paying the article processing charge (APC) so that your work becomes Gold Open Access. This is expensive for most individuals and your funder or institution may pay the APC on your behalf – but you must ask. You can also ask the journal if other forms of Open Access are appropriate or possible (Table?1). Next, you can approach your department, institution or university to see what promotion it can offer. Sometimes, the journal may have declined to issue a press release, but others still might believe your work to be newsworthy. Authors could even approach newspapers, radio stations, broadcasters and journalists independently. Finally, you may wish to approach blog and podcast producers, conference organisers and social media influencers. The more methods used to communicate key messages from your work, the higher the reach of your paper….”

Who tweets climate change papers? investigating publics of research through users’ descriptions | PLOS ONE

As social issues like climate change become increasingly salient, digital traces left by scholarly documents can be used to assess their reach outside of academia. Our research examine who shared climate change research papers on Twitter by looking at the expressions used in profile descriptions. We categorized users in eight categories (academia, communication, political, professional, personal, organization, bots and publishers) associated to specific expressions. Results indicate how diverse publics may be represented in the communication of scholarly documents on Twitter. Supplementing our word detection analysis with qualitative assessments of the results, we highlight how the presence of unique or multiple categorizations in textual Twitter descriptions provides evidence of the publics of research in specific contexts. Our results show a more substantial communication by academics and organizations for papers published in 2016, whereas the general public comparatively participated more in 2015. Overall, there is significant participation of publics outside of academia in the communication of climate change research articles on Twitter, although the extent to which these publics participate varies between individual papers. This means that papers circulate in specific communities which need to be assessed to understand the reach of research on social media. Furthermore, the flexibility of our method provide means for research assessment that consider the contextuality and plurality of publics involved on Twitter.

Open Science for Non-Specialists: Making Open Science Meaningful Beyond the Scientific Community | Philosophy of Science | Cambridge Core

Abstract:  A major goal of the open science movement is to make more scientific information available to non-specialists, but it has been difficult to meaningfully achieve that goal. In response, this paper argues for two steps: (1) focusing on the scientific content that is most relevant to non-specialist audiences; and (2) packaging that content in meaningful ways for those audiences. The paper uses a case study involving a major environmental health issue (namely, PFAS pollution) to illustrate how the proponents of open science can work with groups like government agencies, nongovernmental organizations, and extension programs to implement these two steps.

 

How Does Citizen Science Change Us? | UCL Institute for Global Prosperity – UCL – University College London

“On 6 April, the Institute for Global Prosperity (IGP) hosted a session at UCL’s Open Science conference. The session asked, ‘How Does Citizen Science Change Us?’, and was dedicated to understanding how Citizen Science (CS) impacts individual citizens, academics and policy makers, as well as wider society. The event also marked the launch of the IGP’s Citizen Science Academy in partnership with the UCL Office for Open Science and Scholarship. The Academy delivers training to citizen researchers in qualitative data collection methods, and provides a theoretical grounding and practical support to citizens researching local pathways to prosperity in their neighbourhoods. …

Open science is about opening access of research to wider audiences. One of the benefits being the ability to bridge the gap between local people and policymakers. ‘How does Citizen Science Change us?’ was an amazing example of this.”

Why does open access make publishing more complicated?

“Open-access publishing is going mainstream. This is sometimes a requirement, but it is also perceived as complex. That’s understandable, considering that OA comes in so many definitions and shades; gold, green, platinum and diamond journals and more shape a moving landscape where different stakeholders push their own agenda.

For researchers, navigating this landscape requires consideration of costs, funding, licences and copyright issues. All these aspects are relatively new compared with the traditional subscription-based system, where researchers would not worry about subscription costs any more than libraries would care about the details of the reviewing process. Redistribution of tasks along the publishing process forces universities and institutions to reorganise their support system. Who can and who should help? And how to do so? …”

 

Why preprints are good for patients | Nature Medicine

“Rapid communication of clinical trial results has likely saved lives during the COVID-19 pandemic and should become the new norm….

But during health emergencies, there are many tensions, one of which is the mismatch between the urgent need for information and evidence and the much longer time frames of scientific peer review and publication. The COVID-19 pandemic is the first global health emergency of the new information age, with data and results widely shared via social media. This has resulted in very real difficulties in distinguishing important information from noise, and real news from fake news. How should the research and medical community best manage this new reality?…

Some may argue that the speed advantage of preprints does not outweigh the risks of poor-quality, misleading or even fraudulent research being published and acted upon. I would counter that clinicians should not rely solely on peer review to assess the validity and meaningfulness of research findings. This is because dubious, perhaps fraudulent data can still get through peer review, as was seen with early COVID papers published and then retracted from two of the most prestigious medical journals. In addition, even valid data can be misleading. There has been an avalanche of observational data that passed peer review and was then used to justify treatments, most notably with hydroxychloroquine, but the susceptibility of observational methodology to moderate biases means that such data should not be the basis of patient care.

I take two lessons from our experience running the largest COVID-19 clinical trial over the last two years. The first is that that the preprint system has come of age, demonstrating huge value in rapidly communicating important research findings. Almost daily I am alerted through social media alerts from trusted sources and colleagues of important new findings published as preprints. A degree of immediate peer review is also available by means of the preprint comments section and from colleagues via social media. The full peer-reviewed manuscripts usually appear many weeks or even months later. I cannot envisage a future without such rapid dissemination of new evidence.

 

Given this new reality, the second lesson is that we must ensure that the medical community and policy makers are sufficiently skilled in critical thinking and scientific methods that they can make sensible decisions, regardless of whether an article is peer reviewed or not.”

Widespread use of National Academies consensus reports by the American public | PNAS

Significance

Advocates for open access argue that people need scientific information, although they lack evidence for this. Using Google’s recently developed deep learning natural language processing model, which offers unrivalled comprehension of subtle differences in meaning, 1.6 million people downloading National Academies reports were classified, not just into broad categories such as researchers and teachers but also precisely delineated small groups such as hospital chaplains, veterans, and science fiction authors. The results reveal adults motivated to seek out the most credible sources, engage with challenging material, use it to improve the services they provide, and learn more about the world they live in. The picture contrasts starkly with the dominant narrative of a misinformed and manipulated public targeted by social media.

Abstract

In seeking to understand how to protect the public information sphere from corruption, researchers understandably focus on dysfunction. However, parts of the public information ecosystem function very well, and understanding this as well will help in protecting and developing existing strengths. Here, we address this gap, focusing on public engagement with high-quality science-based information, consensus reports of the National Academies of Science, Engineering, and Medicine (NASEM). Attending to public use is important to justify public investment in producing and making freely available high-quality, scientifically based reports. We deploy Bidirectional Encoder Representations from Transformers (BERT), a high-performing, supervised machine learning model, to classify 1.6 million comments left by US downloaders of National Academies reports responding to a prompt asking how they intended to use the report. The results provide detailed, nationwide evidence of how the public uses open access scientifically based information. We find half of reported use to be academic—research, teaching, or studying. The other half reveals adults across the country seeking the highest-quality information to improve how they do their job, to help family members, to satisfy their curiosity, and to learn. Our results establish the existence of demand for high-quality information by the public and that such knowledge is widely deployed to improve provision of services. Knowing the importance of such information, policy makers can be encouraged to protect it.

Patient involvement in clinical research: why, when, and how – PMC

Abstract:  The development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with Patients. This work describes the why, when, and how of more active patient participation in the research process. Specific measures are proposed to improve patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. In order to achieve these aims, the relative emphases on the ethical principles underlying research need to be changed. The current model based on the principle of beneficence must be left behind, and one that upholds the ethical principles of autonomy and non maleficence should be embraced. There is a need to improve the level of information that patients and society as a whole have on research objectives and processes; the goal is to promote the gradual emergence of the expert patient.

From the body of the paper: “According to some surveys, ?95% of patients and members of IRBs believe that patients should be informed of the results of the research study. Nevertheless, this is a fairly uncommon practice, and the usual situation is that after participating in a study, patients are not notified of the results.”