Equitable access to scientific and technical information for health

“The encouragement given by scholars to projects such as the Public Library of Science (6), the Budapest Open Access Initiative (7) and the Open Archives Initiative (8) indicates both widespread support for greater access and the capacity to provide it. Health is perhaps the area of most intense demand for greater access to scientific and technical information, partly because failure to obtain it can be literally fatal. A public which pays for most medical research through taxes and other public funds is becoming increasingly puzzled by the barriers that deny access to the results of that research. The time is ripe for action. The initiatives already begun by publishers are a good sign, but can only be regarded as initial steps. A more comprehensive solution, allowing access for all those who need the information, is required. Hippocrates would have been delighted to see such an effective means of improving expertise and reducing ignorance.”

Health Equity, A New Peer-Reviewed Open Access Journal, Launching Fall 2016

“New Rochelle, NY, June 23, 2016—Mary Ann Liebert, Inc., publishers announces the launch of Health Equity, a new peer-reviewed open access journal that will address the urgent need for authoritative information about health disparities and health equity among vulnerable populations. Content will range from translational research to prevention, diagnosis, treatment, and management of disease and illness toward the goal of optimal outcomes and ultimately health equity for all. Health Equity will launch an inaugural issue in fall 2016 and will be published open access to ensure broad and timely distribution of information without barriers to access.”

Can an open drug discovery model find a solution for rare brain cancers in children? « OICR News

“OICR-funded drug discovery project’s unique ‘open science’ business model is accelerating the search for a solution to lethal pediatric brain cancers Diffuse intrinsic pontine glioma (DIPG) is a lethal and inoperable brain cancer with a median survival of less than a year from diagnosis. Finding solutions to this disease is challenging due to its rarity, scientific complexity and its presentation in pediatric populations. An OICR-funded team of researchers, led by Dr. Aled Edwards from M4K Pharma, have developed new potential drug candidates for DIPG that they will test in animal models in the coming months. They’ve reached this milestone ahead of schedule, with fewer resources required than anticipated, by using an ‘open drug discovery’ approach – sharing their methods and data with the greater research community to streamline the drug discovery process….”

DFG awards prize for two alternatives to animal experiments – BIOENGINEER.ORG

“Noori is now making the data from what currently amounts to nearly 150,000 rats available in two open access databases, which researchers all over the world can use to address research questions relating to neuroanatomy and neuropharmacology. The databases will help scientists to answer research questions in silico – by analysing existing data – or to plan new experiments more stringently. The use of big data in preclinical neuroscience offers considerable potential for animal welfare in research….”

Terms and conditions for research grants | Parkinson’s UK

“Once a grant has been awarded [by Parkinson’s UK] and accepted, the grantholder and host institution are bound by our research grant terms and conditions and revenue sharing policy….”

The policy was apparently new or updated in July 2018.

HHS Plans to Delete 20 Years of Critical Medical Guidelines Next Week | US Department of Health and Human Services

“Experts say the database of carefully curated medical guidelines is one of a kind, used constantly by medical professionals, and on July 16 will ‘go dark’ due to budget cuts.

The Trump Administration is planning to eliminate a vast trove of medical guidelines that for nearly 20 years has been a critical resource for doctors, researchers and others in the medical community. Maintained by the Agency for Healthcare Research and Quality [AHRQ], part of the Department of Health and Human Services, the database is known as the National Guideline Clearinghouse [NGC], and it’s scheduled to “go dark,” in the words of an official there, on July 16. Medical guidelines like those compiled by AHRQ aren’t something laypeople spend much time thinking about, but experts like Valerie King, a professor in the Department of Family Medicine and Director of Research at the Center for Evidence-based Policy at Oregon Health & Science University, said the NGC is perhaps the most important repository of evidence-based research available. “Guideline.gov was our go-to source, and there is nothing else like it in the world,” King said, referring to the URL at which the database is hosted, which the agency says receives about 200,000 visitors per month. “It is a singular resource,” King added. Medical guidelines are best thought of as cheatsheets for the medical field, compiling the latest research in an easy-to use format. When doctors want to know when they should start insulin treatments, or how best to manage an HIV patient in unstable housing — even something as mundane as when to start an older patient on a vitamin D supplement — they look for the relevant guidelines. The documents are published by a myriad of professional and other organizations, and NGC has long been considered among the most comprehensive and reliable repositories in the world. AHRQ said it’s looking for a partner that can carry on the work of NGC, but that effort hasn’t panned out yet. “AHRQ agrees that guidelines play an important role in clinical decision making, but hard decisions had to be made about how to use the resources at our disposal,” said AHRQ spokesperson Alison Hunt in an email. The operating budget for the NGC last year was $1.2 million, Hunt said, and reductions in funding forced the agency’s hand.”

Think you have remarkable memory traits? Share them by participating in the Harvard PGP-Lumosity Memory Challenge – Citizen Science Salon : Citizen Science Salon

“In 2005, [George Church] launched the Personal Genome Project (PGP), which collects data on a person’s DNA, environmental background, and relevant health and disease information from consenting participants. The premise of the PGP is grounded in open science, meaning that all this data is publicly available to researchers, who then study the relationship between specific DNA sequences and various displayed traits, like having an especially good memory.

This openness is the hallmark of the PGP, described on their website as “a vision and coalition of projects across the world dedicated to creating public genome, health, and trait data.” The PGP seeks to share data for the “greater good” in ways that have been previously “hampered by traditional research practices.” In other words, by being set up so it’s open-access project that allows individuals to freely share their data with researchers, no single researcher can “control” access to the data. By inviting participants to openly share their own personal data, this project allows individuals to directly impact scientific progress….”

The effect of consultant outcome publication on surgeon behaviour: a systematic review and narrative synthesis | The Annals of The Royal College of Surgeons of England

“Surgeon-specific outcome data, or consultant outcome publication, refers to public access to named surgeon procedural outcomes. Consultant outcome publication originates from cardiothoracic surgery, having been introduced to US and UK surgery in 1991 and 2005, respectively. It has been associated with an improvement in patient outcomes. However, there is concern that it may also have led to changes in surgeon behaviour. Surgeon-specific outcome data, or consultant outcome publication, refers to public access to named surgeon procedural outcomes. Consultant outcome publication originates from cardiothoracic surgery, having been introduced to US and UK surgery in 1991 and 2005, respectively. It has been associated with an improvement in patient outcomes. However, there is concern that it may also have led to changes in surgeon behaviour. This review assesses the literature for evidence of risk-averse behaviour, upgrading of patient risk factors and cessation of low-volume or poorly performing surgeons….[F]urther research is essential to ensure that high-risk patients are not inappropriately turned down for surgery.”

NIH 3D Print Exchange | A collection of biomedical 3D printable files and 3D printing resources supported by the National Institutes of Health (NIH)

“3D printing technology is advancing at a rapid pace, but it is difficult to find or create 3D-printable models that are scientifically accurate or medically applicable. The NIH 3D Print Exchange provides models in formats that are readily compatible with 3D printers, and offers a unique set of tools to create and share 3D-printable models related to biomedical science….

Creative Commons licenses can be applied to models submitted to our database. Read our licensing policy to find find out more information on permission, attribution, and how to choose a license….”

 

APHA unlocks free public access to articles on firearms issues and research

“The American Public Health Association (APHA) is offering free access to peer-reviewed research articles and commentaries on firearms and public health published in the American Journal of Public Health. Available articles cover topics such as firearm storage practices in the United States, public opinion on the issue of carrying guns in public places, and state firearm laws. In a statement, the APHA says it hopes this action will “lead to smarter evidence-based policies that enhance firearm safety and violence prevention.” Going forward, the journal will continue free public access to all research on the topic.”