Deans' stroke musings: Expanding the Science of Patient Input: Building Smarter Patient Registries

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, February 18, 2016

Expanding the Science of Patient Input: Building Smarter Patient Registries - Stroke

If our fucking failures of stroke associations wanted to do at least the minimal necessary to be considered a stroke association they would setup these patient registries for all hospitals treating stroke patients. But this won't occur because it is too godammed much work for our stroke associations to do. And their boards of directors are ok with allowing such failures.
http://www.fastercures.org/reports/view/55

Decision-makers in research, industry, policy and health-care settings are actively seeking robust sources of patient data to inform patient-centered practices, policies and outputs. Scientific rigor throughout this process is of paramount importance to ensure solid outcomes. This report, as a part of our Patients Count: The Science of Patient Input program, is aimed at establishing rigorous methods and reliable practices for understanding and incorporating patient needs into the process of developing, regulating and delivering new therapies.