What is RIAT? – RIAT Support Center

“RIAT is an international effort to tackle bias in the way research is reported with the goal of providing more accurate information to patients and other healthcare decision makers.

Randomized controlled trials are known as medicine’s “gold standard” for reliable evidence. However, they are falling short of that standard, in large part due to two fundamental problems:

MISREPORTING: many trials that are published are inaccurately or incompletely reported (misreported trials)
INVISIBILITY: not all trials conducted are published (unpublished trials)

When the original investigators or sponsors do not correct misreporting, or even leave the entire trial unpublished, they can be considered to have abandoned their trial. And the downstream effects can be substantial, drawing to false conclusions about the effectiveness and safety of medical interventions.

The RIAT initiative aims to address these problems by offering a methodology that allows other people to responsibly correct the record….”

Open access publishing is the ethical choice | Wonkhe

“I had a stroke half a decade ago and found I couldn’t access the medical literature on my extremely rare vascular condition.

I’m a capable reader, but I couldn’t get past the paywalls – which seemed absurd, given most research is publicly funded. While I had, already, long been an open access advocate by that point, this strengthened my resolve.

The public is often underestimated. Keeping research locked behind paywalls under the assumption that most people won’t be interested in, or capable of, reading academic research is patronising….

While this moral quandary should not be passed to young researchers, there may be benefits to them in taking a firm stance. Early career researchers are less likely to have grants to pay for article processing charges to make their work open access compared to their senior colleagues. Early career researchers are also the ones who are inadvertently paying the extortionate subscription fees to publishers. According to data from the Higher Education Statistics Agency (HESA), the amount of money UK universities fork out each year to access paywalled content from Elsevier – the largest academic publisher in the world – could pay 1,028 academic researchers a salary of £45,000 per year.

We know for-profit publishers, such as Elsevier, hold all the cards with respect to those prestigious titles. What we need are systematic “read and publish” deals that allow people to publish where they want without having to find funding for open access….

The current outlook for prospective researchers to secure an academic position at a university is compromised because so much money is spent propping up for-profit, commercial publishers. Rather than focusing on career damage to those who can’t publish with an Elsevier title, we should focus on the opportunity cost in hundreds of lost careers in academia….”

COVID-19 and the research scholarship ecosystem: help! – Journal of Clinical Epidemiology

Highlights

Data sharing is not common as part of biomedical publications
To increase data sharing biomedical journals, funders and academic institutions should introduce policies that will enhance data sharing and other open science practices
As part of research assessments incentives and rewards need to be introduced

Abstract

Objectives

Data sharing practices remain elusive in biomedicine. The COVID-19 pandemic has highlighted the problems associated with the lack of data sharing. The objective of this article is to draw attention to the problem and possible ways to address it.

Study Design and Setting

This article examines some of the current open access and data sharing practices at biomedical journals and funders. In the context of COVID-19 the consequences of these practices is also examined.

Results

Despite the best of intentions on the part of funders and journals, COVID-19 biomedical research is not open. Academic institutions need to incentivize and reward data sharing practices as part of researcher assessment. Journals and funders need to implement strong polices to ensure that data sharing becomes a reality. Patients support sharing of their data.

Conclusion

Biomedical journals, funders and academic institutions should act to require stronger adherence to data sharing policies.

Training researchers in dissemination of study results to research participants and communities | Translational Behavioral Medicine | Oxford Academic

Abstract:  Dissemination of research beyond the academic community is an ethical responsibility of researchers and necessary in translational research to help ensure the uptake of research findings to improve health outcomes. Often, partnerships between community and academicians do not include research dissemination plans, possibly reflecting researchers not knowing how to create these plans. This manuscript details the development process of a research dissemination training module for academicians and researchers. This training was conceptualized and developed by Core faculty and staff. Development steps were: (a) identifying researchers’ dissemination needs using the Core Investigator Survey; (b) identifying communities dissemination needs/preferences using feedback from our community advisory board; (c) conducting a literature search to identify dissemination concepts from researchers and community perspectives; (d) developing the training module; (e) conducting a cognitive review with one basic science researcher and one community-based participatory researcher; (f) evaluating the training; and (g) finalizing the training module. Training attendees included 1 clinical and 3 basic science clinical researchers, a biomedical postdoctoral fellow, and 10 research staff. Of those completing the feedback survey, 60% had some experience with research dissemination. As a result of training, more than 50% of respondents strongly agreed that as researchers they have a clear understanding of dissemination, a greater understanding of the dissemination process, how to identify stakeholders and successfully develop a dissemination plan. While disseminating research findings beyond academic publications may be new to some researchers, this training provided the tools to implement dissemination practices in their current and future research.

 

Open Notes: New Federal Rules Promoting Open and Transparent Communication – ScienceDirect

“While health systems and clinicians are increasingly aware of new federal rules1 that mandate offering patients access to the notes clinicians write in electronic health records (open notes), for many, and certainly for patients and their families, they come as a surprise. Taking effect April 5, 2021, the rules enact the bipartisan 21st Century Cures Act and aim to increase interoperability and ensure greater transparency in health care. Many health professionals support these goals but are anxious about how their practice and clinician-patient relationships may be affected. Stimulated in part by the OpenNotes movement,2 considerable anecdotal and research evidence is accumulating from the more than 250 health systems3 already sharing clinical notes with 55 million Americans registered on their electronic patient portals. More than 100 papers have been published dissecting the effects on care of this fundamental change in practice.2 What is being learned?”

Patient involvement in medical publications – PharmaTimes

“A main finding from resurveyed editors was that a combined 89% said there is no suitable formal role for patients as reviewers of medical literature. Asked to interpret prior results, 26% said that a lack of patient involvement may reflect a lag in acceptance and/or implementation of such processes overall, but more telling was that almost two-thirds (64%) maintained that drives to include patients in peer-reviewed journals’ editorial processes – unlike in drug development and/or clinical trial design – may need re-evaluation. That said, a number of editors did suggest that patients could serve valuable roles reviewing specific types of articles, for example, those dealing with adherence or quality of life….”

The Health care data sharing rule and its roots at Boston Children’s Hospital – Discoveries

“Are you sick of health care systems not communicating with each other? Do you wish you could access more of your medical information — or your patients’ information — online? Do you ever wonder whether a health pattern you see is part of a larger trend? Two key developments have advanced the vision of seamless, secure exchange of electronic health records (EHRs) among health care institutions and patients.

That vision includes being able to learn from our data at a population scale. Through federal regulations issued this year, it will finally become reality in 2022. And the vision began at Boston Children’s Hospital more than a decade ago….”

OpenNotes – Patients and clinicians on the same page

“OpenNotes is the international movement promoting and studying transparent communication in healthcare. We help patients and clinicians share meaningful notes in medical records. We call these open notes….

OpenNotes is not software or a product. It’s a call to action.”

 

Federal Rules Mandating Open Notes

“Taking effect in April, 2021, rules implementing the bipartisan federal Cures Act specify that clinical notes are among electronic information that must not be blocked and must be made available free of charge to patients. To meet the interests of some patients, the rules allow specified exceptions….”

A model Open Access journal for researchers, practitioners and patients | Plan S

“Having worked to promote openness of research findings for some considerable time, it’s great to come across examples that illustrate why you’re making all the effort. The Journal of Patient Experience (published by the Association for Patient Experience/SAGE) uses a publication model that demonstrates an excellent use case for openness. This journal describes itself as: Giving voice to our patients and our providers, the Journal of Patient Experience (JPE) is an open access, peer-reviewed journal which focuses on presenting advances and applications that impact the patient experience….”