Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Showing posts with label open access. Show all posts
Showing posts with label open access. Show all posts

Monday, December 23, 2019

Open Access for research

 We need open access to all research, for only by that access can survivors tell doctors what is currently  out there for use.   What is more important, patients getting the best information or profits? What is the point of publishing research anyway?  The real need is to distribute the created protocols to every stroke hospital in the world. Which if we had anything other than fucking failures of stroke associations would be done by said stroke associations. And until survivors are in charge such innovative ideas won't occur.  Your children and grandchildren will be screwed when they have strokes if we don't take charge.

Open Access

 President Donald J. Trump The White House 1600 Pennsylvania Avenue NW Washington, D.C. 20500

Dear President Trump:

The undersigned organizations represent the leading publishers and non-profit scientific societies in the United States. We write to you with deep concern regarding a proposed policy that has come to our attention that would jeopardize the intellectual property of American organizations engaged in the creation of high-quality peer-reviewed journals and research articles and would potentially delay the publication of new research results. The role of the publisher is to advance scholarship and innovation, fostering the American leadership in science that drives our economy and global competitiveness. As copyrighted works, peer-reviewed journal articles are licensed to users in hundreds of foreign countries, supporting billions of dollars in U.S. exports and an extensive network of American businesses and jobs. In producing and disseminating these articles, we make ongoing competitive investments to support the scientific and technical communities that we serve.

As noted above, we have learned that the Administration may be preparing to step into the private marketplace and force the immediate free distribution of journal articles financed and published by organizations in the private sector, including many non-profits. This would effectively nationalize the valuable American intellectual property that we produce and force us to give it away to the rest of the world for free. This risks reducing exports and negating many of the intellectual property protections the Administration has negotiated with our trading partners. We write to express our strong opposition to this proposal, but in doing so we want to underscore that publishers make no claims to research data resulting from federal funding.

To be clear, publishers both support and enable “open access” business models and “open data” as important options within a larger framework that assumes critical publisher investments remain viable. Under a legacy regulation that is still in force today, proprietary journal articles that report on federally funded research must be made available for free within 12 months of publication. This mandate already amounts to a significant government intervention in the private market. Going below the current 12 month “embargo” would make it very difficult for most American publishers to invest in publishing these articles. As a consequence, it would place increased financial responsibility on the government through diverted federal research grant funds or additional monies to underwrite the important value added by publishing.

In the coming years, this cost shift would place billions of dollars of new and additional burden on taxpayers. In the process, such a policy would undermine American jobs, exports, innovation, and intellectual property. It could also result in some scientific societies being forced to close their doors or to no longer be able to support the publication of U.S.-sponsored science that is key to ensuring that the U.S. remains the world leader in science and technology.
In addition to financing and managing a world-leading peer review process, publishers make extensive investments in education, research, and innovative digital platforms that advance American competitiveness and help ensure the quality and integrity of American science. Undermining the marketplace is unnecessary, counterproductive, and would significantly harm the system of peer-reviewed scholarly communication that fuels America’s leadership in research and innovation.

We urge you to oppose this proposed policy, and we look forward to working with the Administration on this matter.


Sincerely yours,


AMDA – The Society for Post-Acute and Long-Term Care Medicine American Academy of Allergy, Asthma & Immunology American Academy of Child and Adolescent Psychiatry American Academy of Family Physicians American Academy of Neurology American Academy of Ophthalmology American Academy of Orthopaedic Surgeons American Academy of Otolaryngology- Head and Neck Surgery American Academy of Pediatrics American Academy of Physical Medicine and Rehabilitation American Association for Anatomy American Association for Cancer Research American Association for Pediatric Ophthalmology and Strabismus American Association for the Study of Liver Diseases American Association for the Surgery of Trauma American Association of Immunologists American Association of Occupational Health Nurses American Association of Physicists in Medicine American Astronomical Society American Cancer Society American Ceramic Society American Chemical Society American College of Cardiology
American College of Emergency Physicians American College of Obstetricians and Gynecologists American College of Physicians American College of Radiology American College of Rheumatology American College of Surgeons American Contact Dermatitis Society American Council on the Teaching of Foreign Languages American Counseling Association American Dental Association American Diabetes Association American Gastroenterological Association American Geophysical Union American Geriatrics Society American Headache Society American Heart Association American Institute of Aeronautics and Astronautics American Institute of Chemical Engineers   American Oil Chemists Society American Medical Association American Neurological Association American Physiological Society American Psychiatric Association American Psychological Association American Sexual Health Association American Sexually Transmitted Diseases Association American Society for Clinical Pharmacology & Therapeutics American Society for Nutrition American Society for Biochemistry and Molecular Biology American Society for Bone and Mineral Research         American Society for Clinical Pathology American Society for Dermatologic Surgery Association American Society for Investigative Pathology
American Society for Parenteral and Enteral Nutrition American Society for Pharmacology and Experimental Therapeutics American Society for Radiation Oncology American Society for Reproductive Medicine American Society of Anesthesiologists American Society of Agricultural and Biological Engineers American Society of Agronomy American Society of Animal Science American Society of Civil Engineers American Society of Clinical Oncology American Society of Cytopathology American Society of Gene & Cell Therapy American Society of Health-System Pharmacists American Society of Heating, Refrigerating & Air-Conditioning Engineers American Society of Hematology American Society of Mechanical Engineers American Society of Nephrology American Society of Neurorehabilitation (ASNR) American Society of Plant Biologists American Society of Plastic Surgeons American Society of Transplantation American Society of Transplant Surgeons American Thoracic Society American Urological Association American Water Works Association Association for Computing Machinery Association for Molecular Pathology Association for Psychological Science Association for the Sciences of Limnology and Oceanography Association of American Publishers Association of Schools and Programs of Public Health Association of Teacher Educators Biophysical Society
Botanical Society of America Common Ground Research Networks Council of Medical Specialty Societies Council of Scientific Society Presidents Crop Science Society of America Ecological Society of America Elsevier Endocrine Society Financial Management Association Genetics Society of America Infectious Diseases Society of America Institute for Operations Research and the Management Sciences Institute of Food Technologists Institute of Industrial and Systems Engineers International Anesthesia Research Society International Literacy Association International Society for Sexual Medicine Journal of Diabetes Science and Technology, Diabetes Technology Society Kappa Delta Pi, International Honor Society in Education Macmillan McGraw-Hill Education Milbank Memorial Fund National Council on Family Relations National Kidney Foundation New England Journal of Medicine published by the Massachusetts Medical Society Orthopaedic Research Society Radiological Society of North America Seismological Society of America Shock Society Society for Leukocyte Biology Society for Research on Adolescence Society for the Psychological Study of Social Issues Society for Research in Child Development
Society of General Internal Medicine Society of Plastics Engineers Soil Science Society of America Software and Information Industry Association The Heart Rhythm Society The Histochemical Society The Journal of Bone & Joint Surgery, Inc. The Minerals, Metals & Materials Society The Optical Society The Triological Society The Voice Foundation University of Chicago Press U.S. Chamber of Commerce Wiley Wolters Kluwer

Cc:  The Honorable Mick Mulvaney, Director, Office of Management and Budget, Acting Assistant to the President and Chief of Staff The Honorable Wilbur Ross, Secretary of Commerce The Honorable Mike Pompeo, Secretary of State The Honorable Mark T. Esper, Secretary of Defense The Honorable Dan Brouillette, Secretary of Energy The Honorable Robert Lighthizer, United States Trade Representative The Honorable Russel Vought, Acting Director, Office of Management and Budget Joe Grogan, Assistant to the President for Domestic Policy Larry Kudlow, Director, National Economic Council Robert O’Brien, National Security Advisor The Honorable Kelvin Droegemeier, Director, Office of Science and Technology Policy The Honorable Andrei Iancu, Director, United States Patent & Trademark Office The Honorablgee Francis Collins, Director, National Institutes of Health The Honorable France A. Córdova, Director, National Science Foundation The Honorable Neil Jacobs, Assistant Secretary of Commerce for Environmental Observation and Prediction The Honorable Vishal Amin, Intellectual Property Enforcement Coordinator 

Monday, February 18, 2019

Stroke Association UK We collaborate to ensure research results are shared openly

Old news but likely to be unhelpful.  Research is not written in plain enough language that survivors can communicate the protocols needed to be created to their doctors.  That is really the job of the Stroke Association, to communicate the protocols from research to all stroke hospitals AND make sure they are implemented in those hospitals. But that won't occur, you survivors are on your own to figure out how research will get you recovered.

Stroke Association UK We collaborate to ensure research results are shared openly

Tuesday 1 May 2018
Announced today, AMRC Open Research is a new online platform for publishing medical research findings.
The Stroke Association is one of 23 members of the Association of Medical Research Charities (AMRC) that are collaborating on the development and launch of this important new initiative.
We hope it will help charities maximise the value of the donations we receive by making it possible for all the findings from the research we fund to be rapidly and openly shared with the scientific community and public.
By removing traditional barriers and delays to publication, and making articles available in a matter of days, rather than the typical months or years that traditional publishing can take, AMRC Open Research could help accelerate our understanding of conditions and diseases that affect so many lives, including stroke.
Dr Richard Francis, Head of Research Awards at the Stroke Association said:
“We want to ensure that all the findings from our funded research, no matter how big or small, are available for all to see. This new platform will enable researchers to disseminate their findings efficiently and transparently”.

To find out more about AMRC Open Research visit the AMRC website.

Friday, October 11, 2013

CEACAM1: An Adhesion Molecule That Limits Blood–Brain Barrier Damage by Neutrophils After Stroke

More unavailability of research. It sounds like something our doctors should be doing immediately post-stroke.  Have your doctor get it and tell you what changes will be made for your next stroke.
http://circres.ahajournals.org/content/113/8/952.full.pdf+html
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Saturday, February 23, 2013

Petition response: Increasing Public Access to the Results of Scientific Research



A start anyway, I could be really annoying if I have access to full articles. I'd become even more arrogant.
The White House
Increasing Public Access to the Results of Scientific Research
By Dr. John Holdren, Assistant to the President for Science and Technology and Director of the White House Office of Science and Technology Policy
Thank you for your participation in the We the People platform. The Obama Administration agrees that citizens deserve easy access to the results of research their tax dollars have paid for. As you may know, the Office of Science and Technology Policy has been looking into this issue for some time and has reached out to the public on two occasions for input on the question of how best to achieve this goal of democratizing the results of federally-funded research. Your petition has been important to our discussions of this issue.
The logic behind enhanced public access is plain. We know that scientific research supported by the Federal Government spurs scientific breakthroughs and economic advances when research results are made available to innovators. Policies that mobilize these intellectual assets for re-use through broader access can accelerate scientific breakthroughs, increase innovation, and promote economic growth. That’s why the Obama Administration is committed to ensuring that the results of federally-funded scientific research are made available to and useful for the public, industry, and the scientific community.
Moreover, this research was funded by taxpayer dollars. Americans should have easy access to the results of research they help support.
To that end, I have issued a memorandum today (.pdf) to Federal agencies that directs those with more than $100 million in research and development expenditures to develop plans to make the results of federally-funded research publically available free of charge within 12 months after original publication. As you pointed out, the public access policy adopted by the National Institutes of Health has been a great success. And while this new policy call does not insist that every agency copy the NIH approach exactly, it does ensure that similar policies will appear across government.
As I mentioned, these policies were developed carefully through extensive public consultation. We wanted to strike the balance between the extraordinary public benefit of increasing public access to the results of federally-funded scientific research and the need to ensure that the valuable contributions that the scientific publishing industry provides are not lost. This policy reflects that balance, and it also provides the flexibility to make changes in the future based on experience and evidence. For example, agencies have been asked to use a 12-month embargo period as a guide for developing their policies, but also to provide a mechanism for stakeholders to petition the agency to change that period. As agencies move forward with developing and implementing these polices, there will be ample opportunity for further public input to ensure they are doing the best possible job of reconciling all of the relevant interests.
In addition to addressing the issue of public access to scientific publications, the memorandum requires that agencies start to address the need to improve upon the management and sharing of scientific data produced with Federal funding. Strengthening these policies will promote entrepreneurship and jobs growth in addition to driving scientific progress. Access to pre-existing data sets can accelerate growth by allowing companies to focus resources and efforts on understanding and fully exploiting discoveries instead of repeating basic, pre-competitive work already documented elsewhere. For example, open weather data underpins the forecasting industry and provides great public benefits, and making human genome sequences publically available has spawned many biomedical innovations—not to mention many companies generating billions of dollars in revenues and the jobs that go with them. Going forward, wider availability of scientific data will create innovative economic markets for services related to data curation, preservation, analysis, and visualization, among others.
So thank you again for your petition. I hope you will agree that the Administration has done its homework and responded substantively to your request.
Stay Connected
The White House

Wednesday, April 11, 2012

Wellcome Trust joins 'academic spring' to open up science

Thanks to Derek Lowe at In the Pipeline for pointing this out. I would love being able to read complete articles rather than unintelligible abstracts.
And with that I could be even more of a pain, asking the authors to explain their writings.
http://www.guardian.co.uk/science/2012/apr/09/wellcome-trust-academic-spring
Wellcome backs campaign to break stranglehold of academic journals and allow all research papers to be shared free online.

One of the world's largest funders of science is to throw its weight behind a growing campaign to break the stranglehold of academic journals and allow all research papers to be shared online.

Nearly 9,000 researchers have already signed up to a boycott of journals that restrict free sharing as part of a campaign dubbed the "academic spring" by supporters due to its potential for revolutionising the spread of knowledge.

But the intervention of the Wellcome Trust, the largest non-governmental funder of medical research after the Bill & Melinda Gates Foundation, is likely to galvanise the movement by forcing academics it funds to publish in open online journals.

Sir Mark Walport, the director of Wellcome Trust, said that his organisation is in the final stages of launching a high calibre scientific journal called eLife that would compete directly with top-tier publications such as Nature and Science, seen by scientists as the premier locations for publishing. Unlike traditional journals, however, which cost British universities hundreds of millions of pounds a year to access, articles in eLife will be free to view on the web as soon as they are published.

He also said that the Wellcome Trust, which spends more than £600m on scientific research a year, would soon adopt a more robust approach with the scientists it funds, to ensure that results are freely available to the public within six months of first publication.

Researchers who do not make their work open access in line with the Trust's policy could be sanctioned in future grant applications to the charity.

Walport, who is a fellow of the Royal Society, Britain's premier scientific academy, said the results of public and charity-funded scientific research should be freely available to anyone who wants to read it, for whatever purpose they need it. His comments echo growing concerns from scientists who baulk at the rising costs of academic journals, particularly in a time of shrinking university budgets.

The majority of the world's scientific research, estimated at around 1.5m new articles each year, is published in journals owned by a small number of large publishing companies including Elsevier, Springer and Wiley. Scientists submit manuscripts to the journals, which are sent out for peer review before publication. The work is then available to other researchers by subscription, usually through their libraries.

Publishers of the academic journals, which can cost universities up to €20,000 (£16,500) a year each to access, argue the price is necessary to sustain a high-quality peer review process.

A spokesperson for Elsevier said the company was open to any "mechanism or business model, as long as they are sustainable and maintain or improve existing levels of quality control".

He added that the company had been working on open access initiatives with funding bodies. "There has been a constructive collaboration as we've worked with the Wellcome Trust to build support and participation among authors … At the same time, we will also remain committed to the subscription model. We want to be able to offer our customers choice, and we see that, in addition to new models the subscription model remains very much in demand."

But the government has also signalled its support for open access. At the launch of the government's innovation strategy in December, David Willetts, minister for universities and science, said he aspired to have all government-funded research published in the public domain.

"We want to move to open access, but in a way that ensures that peer review and publishing continues as a function. It needs to be paid for somehow."

Science funders say this is not the problem. "I think publishing is a cost of research in the same way as buying a centrifuge is a cost of research," said Walport. "We have to maximise the public benefit of the research that we publish and we only do that by distribution."

According to David Prosser, executive director of Research Libraries UK, British universities spend around £200m a year on subscriptions to electronic databases and journals, which is around 10% of the block grants the institutions receive from government. The exact prices paid by university libraries are covered by confidentiality clauses with publishers but Prosser said that many of Britain's big universities "are spending, with some of our largest publishers, more than £1m a year each".

The rising costs of journal subscriptions have led many scientists around the world to question the business models of the publishers, which can make profit margins of more than 35% through selling access to the results of publicly-funded research. Proponents for open access in science argue that research papers should be freely available to anyone who wants to read them, with the publication costs borne by the authors of the work, perhaps as part of the research grant that pays for their work.

"If you look at the way the web works and what makes effective information dissemination on the web, then it's clear that open content spreads further, has more influence, is used in more ways than the people who wrote it could ever expect," said Cameron Neylon, a biophysicist who will take up a position as director of advocacy at Public Library of Science, an open access publisher, in July.

"From the perspective of research funders, particularly public research funders, the attitude has to be 'we fund this research, it generates these particular outputs, some of them are journal publications, how do we ensure that we maximise the impact that those outputs have?'"

The Wellcome Trust makes money available to its grant holders so that they can pay publishers to make their work freely available. The problem, said Walport, is that only 55% of Wellcome-funded researchers comply. Scientists often do not take up the open-access option or end up publishing in journals that refuse to make the work open access.

To force more scientists into submitting their work into open-access journals, Walport said the Wellcome Trust was considering sanctions for researchers and universities if Wellcome-funded research is not made freely available. One option under examination is to make grant renewals contingent on open access compliance, so that new money would be released only once a scientist's previous Trust-supported work is fully accessible.

Another proposal is to require universities to confirm that papers produced with a Wellcome grant are accessible before the final instalment of that grant is paid.

"If a journal won't comply with our grant conditions, then we're effectively saying you can't publish in that journal," he said, although the Trust does not support the boycott of paid-access journals.

Even the six-month stipulation keeps original research out of the public domain for too long, added Walport.

"Frankly, it's a bit like saying you can have the Guardian free after three weeks – the news section has little value at that stage. I would say that even six months is ultimately too long for research."

Another issue for many scientists is that publishing houses get the services of scientists, for the purposes of peer review, for free.

"One of the biggest costs in the whole scientific publishing world is borne by the academic community, which is the peer review," said Walport. "The journals have benefitted from having free, potentially very expensive consultancy. Again, why do we do that, if the end product is going to be locked behind a paywall?"

Walport said there was a trend for conservatism in the scientific community because scientists want to get published in the most prestigious journal brands such as Nature, Science or Cell. Until relatively recently, there were not many alternatives for researchers who wanted to make a big impact with their work – but the commercial success of open-access journals published by the PLoS group, has proved that open access can make money. "PLoS ONE is now the largest scientific journal in the world and this is ramping up," said Walport.

To address the lack of competition, the Wellcome Trust has teamed up with the Max Planck Society in Germany and the Howard Hughes Medical Institute in the US to set up a new open-access journal called eLife. "The idea is that that will take on the very top end of the scientific publishing industry, a visible high-profile competitor to Nature and Science," said Walport. "In no sense is this a war in which we're trying to put them out of business, the thing that would be best for them [publishers] to do is to change their publishing model."

Willetts has appointed Dame Janet Finch, a former vice-chancellor of Keele University, to sit down with academics and publishers to work out how an open-access scheme for publicly-funded research might function in the UK.

Research Councils UK, the co-ordinating body for the distribution of more than £3bn of government money via the science research councils, has issued a consultation on open access. The main recommendation is in line with the Wellcome Trust's policy, that the final version of research papers produced as a result of public money must be made open access online within six months of initial publication.