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.

Thursday, June 11, 2015

Patients increasingly in the driver's seat on medical research

This can't come soon enough for stroke. Whoever was driving stroke research before drove the bus off the cliff and walked away from the wreck, leaving all the passenger(survivors) to fend for themselves.
http://stm.sciencemag.org/content/7/291/291fs25.full

Abstract

The premier position of medical research on the U.S. national policy agenda offers an unprecedented opportunity to advance the science of patient input and marks a turning point in the evolution of patient engagement.
For most of history, patients have been the passive recipients of medical care with little or no role in research. Even as research subjects, patients were not required to give informed consent prior to adoption of the Nuremburg Code in 1947. Since then, patient participation has expanded dramatically, and today, opportunities abound to serve as active partners in defining and prioritizing research questions and solutions. As digital strategist Leonard Kish declared in 2012, “If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it” (1).
Patient engagement offers the promise of advancing more personal and efficacious medical products faster than the typical ~15-year discovery-to-market timeline (2). Here, we explore the early foundations of patient engagement (table S1), where it occurs in the drug-development pipeline, the power of recent policy initiatives, and prospects for success in improving health outcomes.

FROM SIDELINES TO CENTER COURT

Early in the last century, patients began to mobilize to accelerate research for particular conditions. The March of Dimes, founded by President Franklin D. Roosevelt in 1938 to expand polio research, is one of the first examples of philanthropy directed at finding treatments and cures. Research supported by individuals through the March of Dimes led to development of the “iron lung” and a successful vaccine. Until recently, this case was an outlier, considering that until the 1973 Patient Bill of Rights was adopted by the American Hospital Association, patients did not necessarily expect to be told their diagnosis, much less have a voice in determining their care plan. Even in recent years, patients didn’t always express their own preferences and expectations for care, deferring to choices the doctor deemed best.
The HIV/AIDS movement catapulted patient needs to the forefront of research and created the force for change that dramatically altered regulatory approval processes at the U.S. Food and Drug Administration (FDA), funding formulas and emphasis at the U.S. National Institutes of Health (NIH), and the path forward for disease organizations. People affected by HIV rallied together and created a movement that demanded change and got results (3): from the creation of Gay Men’s Health Crisis in New York in 1982 and the AIDS Coalition to Unleash Power in 1987, to the National Institute of Allergy and Infectious Diseases’ (NIAID’s) formation of the largest HIV clinical trials network in the world, to protests at both NIH and FDA, to passage of the Ryan White Comprehensive AIDS Resources Emergency Act in 1990.
The HIV/AIDS model continues to provide a roadmap followed by other patient communities, demonstrating that it is not enough to question the status quo; you have to do the hard work of presenting well-founded alternatives. As Anthony Fauci, director of NIAID, noted at a FasterCures event in 2011, “If you really want to shake cages you have to be persistent. This is very different than coming to a meeting once a year. We knew the HIV/AIDS activists weren’t going away.”
Today, the role of patients as partners permeates the R&D landscape, extending far beyond the traditional model of funding basic science through donations. Spurred on by the increase of entrepreneurial philanthropy and the proliferation of technology that connects and empowers patient communities, patient influence on decision-making is increasing. In particular, the venture philanthropy drug-development model pioneered by the Cystic Fibrosis Foundation—which led to the codevelopment, with Vertex Pharmaceuticals, of Kalydeco, the first disease-modifying treatment aimed at the genetic cause of cystic fibrosis—is gaining steam and altering the landscape of disease research and cross-sector collaboration.
The U.S. federal government recently initiated a series of efforts to more formally incorporate patient input into its decision-making processes. Efforts and entities have jumpstarted activities across the medical products industry to elicit and include patient perspectives along the full range of clinical development, such as the Patient-Centered Outcomes Research Institute (PCORI), established through the Affordable Care Act in 2010; the Patient-Focused Drug Development initiative at the FDA, mandated under the fifth reauthorization of the Prescription Drug User Fee Act (PDUFA) in 2012; and a Patient Preference Initiative launched by the FDA’s Center for Devices and Radiologic Health (CDRH) in 2013.

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