Are huge genetic databases leaving marginalized people out of their data? | Salon.com

“However, as promising as biobanks might seem, the data may tell only partial or even misleading stories. Criticisms of the project include that the research coming out of the UK Biobank will only benefit certain people, and even then, the usefulness of the health associations found are under question.

Compared to the 2011 UK census, Black, Indian, Pakistani and Chinese participants are all underrepresented in the Biobank by at least one third. David Curtis, at University College London, tested whether this under-representation of ethnic minority groups has any impact on schizophrenia genetics research….”

Data sharing practices in randomized trials of addiction interventions – ScienceDirect

“Highlights

 

• No investigation of data sharing practices in published addiction medicine trials has been conducted.
• We found that zero included addiction medicine trials shared their data publicly.
• The implications may include delays to scientific progress or self-correction, as well as a breach of social contracts to the public, who funded the majority of included trials….”

 

Data sharing practices in randomized trials of addiction interventions – ScienceDirect

“Highlights

 

• No investigation of data sharing practices in published addiction medicine trials has been conducted.
• We found that zero included addiction medicine trials shared their data publicly.
• The implications may include delays to scientific progress or self-correction, as well as a breach of social contracts to the public, who funded the majority of included trials….”

 

Publishing in 2020: A checklist to support a shift in behaviour to achieve best practice – Cobey – – European Journal of Clinical Investigation – Wiley Online Library

Abstract:  When it comes to publishing, researchers’ stated norms for established best practices often do not align with their actual behaviour1. Consider the example of data sharing: failure to share research data when publishing is increasingly viewed as a barrier to research progress, and to contribute to waste and inefficiency2. Policies seeking to maximise the value of public funding are at the heart of the data sharing movement. Patients appear to be overwhelmingly agreeable to their data being shared too3.

Developing an Open Access, Competency-Based Global Oral Health Curriculum: A Global Health Starter Kit | Journal of Dental Education

Abstract:  Dental education has seen increases in global health and international educational experiences in many dental schools’ curricula. In response, the Consortium of Universities for Global Health’s Global Oral Health Interest Group aims to develop readily available, open access resources for competency-based global oral health teaching and learning. The aim of this study was to develop and evaluate a Global Health Starter Kit (GHSK), an interdisciplinary, competency-based, open access curriculum for dental faculty members who wish to teach global oral health in their courses. Phase I (2012-17) evaluated longitudinal outcomes from two Harvard School of Dental Medicine pilot global health courses with 32 advanced and 34 predoctoral dental students. In Phase II (2018), the Phase I outcomes informed development, implementation, and evaluation of the open access GHSK (45 enrollees) written by an interdisciplinary, international team of 13 content experts and consisting of five modules: Global Trends, Global Goals, Back to Basics: Primary Care, Social Determinants and Risks, and Ethics and Sustainability. In Phase III (summer and fall 2018), five additional pilot institutions (two U.S. dental schools, one U.S. dental hygiene program, and two dental schools in low- and middle-income countries) participated in an early adoption of the GHSK curriculum. The increase in perceived knowledge scores of students enrolled in the pilot global health courses was similar to those enrolled in the GHSK, suggesting the kit educated students as well or better in nearly all categories than prior course materials. This study found the GHSK led to improvements in learning in the short term and may also contribute to long-term career planning and decision making by providing competency-based global health education.

Big Pharma has failed: the antibiotic pipeline needs to be taken under public ownership

“Looking into the past shows that public ownership of antibiotic R&D is not as radical as it may sound. During the second world war, allied research on penicillin – the most iconic antibiotic – was publicly financed, organised and owned. In fact, the original penicillin was never patented….”

Data sharing from clinical trials: lessons from the YODA Project – STAT

“This week, the National Academies of Science, Engineering, and Medicine are convening the workshop “Sharing Clinical Trial Data: Challenges and a Way Forward” just shy of five years after the Institute of Medicine released its seminal report, “Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk.”

During this time, the scientific culture regarding data sharing has shifted. Just last week, the National Institutes of Health requested public comments on its draft “Policy for Data Management and Sharing.” In 2018, the International Committee of Medical Journal Editors began requiring data-sharing plans for clinical trials as a condition for publication in member journals. And platforms such as ClinicalStudyDataRequest.com, Project Data Sphere, and BioLINCC have emerged or grown. These platforms use a variety of different governance structures and models for data access, developed both with and without the support of industry or government….

The Yale Open Data Access (YODA) Project, which two of us (J.S.R. and H.M.K.) co-direct, launched in 2011 and formed a partnership with Johnson & Johnson in 2014. This five-year partnership offers an opportunity to reflect on some of the questions about sharing clinical trial data that may inform ongoing and future efforts….”

The death of the literature review and the rise of the dynamic knowledge map | Impact of Social Sciences

“Literature reviews are a core part of academic research that are loathed by some and loved by others. The LSE Impact Blog recently presented two proposals on how to deal with the issues raised by literature reviews: Richard P. Phelps argues, due to their numerous flaws, we should simply get rid of them as a requirement in scholarly articles. In contrast, Arnaud Vaganay proposes, despite their flaws, we can save them by means of standardization that would make them more robust. Here, I put forward an alternative that strikes a balance between the two: Let’s build databases that help systemize academic research. There are examples of such databases in evidence-based health-care, why not replicate those examples more widely?…”

Open sesame: An in?genie?ous step towards open access – Malhi – 2019 – Bipolar Disorders – Wiley Online Library

“In this context, a recent initiative in Germany now allows German institutions to publish open access with publishers such as Wiley. The agreement between Projekt DEAL institutions and Wiley is part of a nationally coordinated strategy to enable a large?scale transition of today’s scholarly journals to open access. As of 2019, researchers from Projekt DEAL institutions can now read all Wiley journals and publish their own primary research and review articles open access, retaining copyright of their works. Wiley will not charge fees to authors covered by the agreement. The Publish and Read (PAR) fees and Gold Open Access APC’s related to the agreement will be paid centrally via institutions but might be subject to local institutional arrangements regarding internal allocation.

For authors publishing articles in Bipolar Disorders several additional national Open Access agreements are relevant from countries such as Norway, Hungary, Austria and the Netherlands. The details of these can be found via Wiley Author Services at https://authorservices-wiley-com.ezp-prod1.hul.harvard.edu/author-resources/Journal-Authors/open-access/affiliation-policies-payments/index.html

These models are moving towards making information available freely to everyone, and everyone is essentially paying for it, accepting it as a necessity and human right. Granting bodies are increasingly funding publication and including these costs in their awards. Clearly the journals also benefit as broader access to a larger population will mean greater citations – enhancement of impact….”

How to add academic journal articles to PubMed: An overview for publishers

“If you work with journals in the biomedical or life sciences, getting the articles you publish added to PubMed to make them more discoverable is likely one of your top goals. But, you may be wondering how to go about it.

We caught up with PubMed Central (PMC) Program Manager Kathryn Funk to get answers to some of the most common questions that we hear from journal publishers about PubMed and the related literature databases at the National Library of Medicine (NLM), MEDLINE and PMC. Read on to learn more about how the PubMed database works and how to apply to have a journal included in MEDLINE or PMC in order to make its articles searchable via PubMed….”