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.”

 

Toppling the Ivory Tower: Increasing Public Participation in Research Through Open and Citizen Science

“Prior to the emergence of professional researchers, amateurs without formal training primarily made contributions to science in what is known as ‘citizen science.’ Over time, science has become less accessible to the public, while at the same time public participation in research has decreased. However, recent progress in open and citizen science may be the key to strengthening the relationship between researchers and the public. Citizen science may also be key to collecting data that would otherwise be unobtainable through traditional sources, such as measuring progress on the United Nations Sustainable Development Goals (SDGs). However, despite myriad benefits, there has been limited legislative action taken to promote open and citizen science policies. The underlying issues are incentive systems which overemphasize publication in high impact, for-profit journals. The suggested policy solutions include: 1) creating an open database for citizen science projects, 2) restricting publishers from disadvantaging citizen science, and 3) incorporating open science in researcher evaluation.”

Supporting patient and public partners in writing lay summaries of scientific evidence in healthcare: a scoping review protocol | BMJ Open

Abstract:  Introduction Despite growing interest among patient and public partners to engage in writing lay summaries, evidence is scarce regarding the availability of resources to support them. This protocol describes the process of conducting a scoping review to: (1) summarise the source, criteria and characteristics, content, format, intended target audience, patient and public involvement in preparing guidance and development processes in the available guidance for writing lay summaries; (2) contextualise the available guidance to the needs/preferences of patient and public partners and (3) create a patient and public partner-informed output to support their engagement in writing lay summaries.

Method and analysis A scoping review with an integrated knowledge translation approach will be used to ensure the collaboration between patient/public partners and researchers in all steps of the review. To meet objective 1, the English language evidence within a healthcare context that provides guidance for writing lay summaries will be searched in peer-reviewed publications and grey literature. All screening and extraction steps will be performed independently by two reviewers. Extracted data will be organised by adapting the European Union’s principles for summaries of clinical trials for laypersons. For objectives 2 and 3, a consultation exercise will be held with patient and public partners to review and contextualise the findings from objective 1. A directed content analysis will be used to organise the data to the needs of the public audience. Output development will follow based on the results.

Ethics and dissemination Ethics approval will be obtained for the consultation exercise. Our target audience will be stakeholders who engage or are interested in writing lay summaries. Our dissemination products will include a manuscript, a lay summary and an output to support patient and public partners with writing lay summaries. Findings will be published in a peer-reviewed journal and presented at relevant conferences.

NIH’s All of Us Research Program returns genetic health-related results to participants | National Institutes of Health (NIH)

“The National Institutes of Health’s All of Us Research Program has begun returning personalized health-related DNA results to more than 155,000 participants, with reports detailing whether participants have an increased risk for specific health conditions and how their body might process certain medications. This marks a major milestone for the program, delivering on its promise to share information and return value to participants….”

What do scientists gain from engaging in publ | EurekAlert!

“Scientists who communicate their research to non-scientific audiences experience positive retroactive effects on their scientific work, according to a newly published study. “As a result of their involvement in public outreach, the scientists we surveyed not only perceived an increase in their personal motivation and competence for public communication, but they also saw benefits related to networking and knowledge exchange with colleagues from other disciplines within interdisciplinary research networks,” explains psychologist Dr Friederike Hendriks from the Technische Universität Braunschweig. Together with psychologist Prof Rainer Bromme from the University of Münster, she collected assessments from scientists at Münster University on their involvement in the public communication activities of two interdisciplinary research networks in the field of cell dynamics and imaging. The basic premise, she says, is that scientists who engage in communication with non-scientific audiences need to broaden their own specialised views of their research in order to make complex topics understandable. As the same principle is true for interactions with fellow researchers from other disciplines, communication with people beyond the scientific community can also promote communication between different disciplines within science….”

Science in motion: A qualitative analysis of journalists’ use and perception of preprints | PLOS ONE

Abstract:  This qualitative study explores how and why journalists use preprints—unreviewed research papers—in their reporting. Through thematic analysis of interviews conducted with 19 health and science journalists in the second year of the COVID-19 pandemic, it applies a theoretical framework that conceptualizes COVID-19 preprint research as a form of post-normal science, characterized by high scientific uncertainty and societal relevance, urgent need for political decision-making, and value-related policy considerations. Findings suggest that journalists approach the decision to cover preprints as a careful calculation, in which the potential public benefits and the ease of access preprints provided were weighed against risks of spreading misinformation. Journalists described viewing unreviewed studies with extra skepticism and relied on diverse strategies to find, vet, and report on them. Some of these strategies represent standard science journalism, while others, such as labeling unreviewed studies as preprints, mark a departure from the norm. However, journalists also reported barriers to covering preprints, as many felt they lacked the expertise or the time required to fully understand or vet the research. The findings suggest that coverage of preprints is likely to continue post-pandemic, with important implications for scientists, journalists, and the publics who read their work.

 

Chief Scientist plan for free research access for all

“The nation’s chief scientist will this year recommend to government a radical departure from the way research is distributed in Australia, proposing a world-first model that shakes up the multi-billion-dollar publishing business so Australian readers don’t pay a cent.

The proposed open access model would give every Australian  access to research without fee – not just researchers – with a new implementation body negotiating a deal with the publishers who have historically kept the work behind paywalls.

The model goes much further than open access schemes in the US and Europe by including existing research libraries and has been designed specifically for Australia’s own challenges.

After exploring the issue for decades, including the last 18 months working on a new national open access strategy, Dr Cathy Foley will recommend the new model to the Albanese government as a way to address key economic and social issues….

Dr Foley has instead opted for a “gold” open access model, where publishers maintain the functional role they play and are paid for it, but must permanently and freely make research literature available online for any Australian to read….

National agreements with publishers would cover both open access publishing costs, also called article processing charges or APCs, for all Australian-led research, and read access for all of Australia to each publisher’s entire catalogue.

In the proposed model, a central body will pool the money usually spent on research access to negotiate a better deal with collective bargaining because even some of Australia’s biggest research institutions pale in comparison to global publishing giants, Dr Foley said….”

Methodology over metrics: current scientific standards are a disservice to patients and society – Journal of Clinical Epidemiology

Abstract:  Covid-19 research made it painfully clear that the scandal of poor medical research, as denounced by Altman in 1994, persists today. The overall quality of medical research remains poor, despite longstanding criticisms. The problems are well known, but the research community fails to properly address them. We suggest that most problems stem from an underlying paradox: although methodology is undeniably the backbone of high-quality and responsible research, science consistently undervalues methodology. The focus remains more on the destination (research claims and metrics) than on the journey. Notwithstanding, research should serve society more than the reputation of those involved. While we notice that many initiatives are being established to improve components of the research cycle, these initiatives are too disjointed. The overall system is monolithic and slow to adapt. We assert that top-down action is needed from journals, universities, funders and governments to break the cycle and put methodology first. These actions should involve the widespread adoption of registered reports, balanced research funding between innovative, incremental and methodological research projects, full recognition and demystification of peer review, improved methodological review of reports, adherence to reporting guidelines, and investment in methodological education and research. Currently, the scientific enterprise is doing a major disservice to patients and society.

 

Open access: The universal norm? | Research Information

“Such a situation, while personally troubling, highlights the importance of open access medical research. I have been blessed to easily be able to get access to much high-quality, open medical research on this condition. Patients are most empowered when they have as much information as possible about their illnesses and I feel fortunate that open access in the medical disciplines has come this far. But, of course, there is still a road to travel. I will probably become a case study since there is not much information on this condition in a non-transplant patient. But this case study might not end up being open access research. As one of my friends put it, there’s “nothing like the warm glow of knowing your health problems have contributed to a paywalled PDF” …

But what I hope is that we find less damaging economic models than the article and book processing charges that have come to dominate. So-called “diamond” open access models, such as those that the team and I have pioneered at the Open Library of Humanities, offer equitable routes to open publishing and appear popular with academic libraries and academics. But such models are endangered by the continued dominance of massive commercial players and their transformative agreements, which threaten to consume entire library budgets in one fell swoop. 

On the one hand, I continue to feel personally opposed to the Big Business model of academic publishing in which large corporations extract massive profits and restrict the free and open flow of research. On the other hand, I am concerned by some of the austerity logics that come out of the open access movement and that devalue all publisher labour. As I wrote at the close of Open Access and the Humanities, almost a decade ago now: “Publishers perform necessary labour that must be compensated and any new system of dissemination, such as open access, will require an entity to perform this labour, even if that labour takes a different form at different levels of compensation”. Striking the right balance here through equitable economic models is the terrain on which the future battle of open access will be fought.”

Caution, Preprint! Brief Explanations Allow Nonscientists to Differentiate Between Preprints and Peer-Reviewed Journal Articles – Tobias Wingen, Jana B. Berkessel, Simone Dohle, 2022

Abstract:  A growing number of psychological research findings are initially published as preprints. Preprints are not peer reviewed and thus did not undergo the established scientific quality-control process. Many researchers hence worry that these preprints reach nonscientists, such as practitioners, journalists, and policymakers, who might be unable to differentiate them from the peer-reviewed literature. Across five studies in Germany and the United States, we investigated whether this concern is warranted and whether this problem can be solved by providing nonscientists with a brief explanation of preprints and the peer-review process. Studies 1 and 2 showed that without an explanation, nonscientists perceive research findings published as preprints as equally credible as findings published as peer-reviewed articles. However, an explanation of the peer-review process reduces the credibility of preprints (Studies 3 and 4). In Study 5, we developed and tested a shortened version of this explanation, which we recommend adding to preprints. This explanation again allowed nonscientists to differentiate between preprints and the peer-reviewed literature. In sum, our research demonstrates that even a short explanation of the concept of preprints and their lack of peer review allows nonscientists who evaluate scientific findings to adjust their credibility perception accordingly. This would allow harvesting the benefits of preprints, such as faster and more accessible science communication, while reducing concerns about public overconfidence in the presented findings.

 

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….”