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Dan Hinmon, MCSMN Director
@DanHinmon

Posts: 2327
Joined: Apr 13, 2011

Engaging Patients Across the Spectrum of Medical Product Development

Posted by @DanHinmon, Dec 15, 2015

“This is huge, by one of the key players in #PMINetwork (Precision Medicine Initiative), Robert Califf, MD (@calif001),” writes @westr. “It shows progress made by patients as partners in their own care, much coming from availability of patient advocacy via social media. Spearheaded by ePatient gurus like @epatientdave, we’re given confirmation that patient concerns will now be part of the normal healthcare ecosystem. That includes the lifecycle of medical product development (drugs & devices).”

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ePatientDave
@epatientdave

Posts: 58
Joined: Apr 29, 2011
Posted by @epatientdave, Dec 15, 2015

AND of course the stupid article about “engaging patients across the spectrum” is not open for patients to even read, much less comment on!

JAMA! Wake up!

The BMJ is tending toward a policy that all articles like this will be open access for the first thirty days. It’s not declared yet, but I think it will happen.

JEEZE! Anyone know to whom we should appeal? I’ll tweet at them as nicely as I can.


Bob West
@westr

Posts: 201
Joined: Feb 07, 2011
Posted by @westr, Dec 15, 2015

Yeah, I knew this could be a problem. But the JAMA article fits in SO NICELY with your (Dave’s) recent “Googling and my medical degree” series it just had to be mentioned. It is also written by someone I consider originally outside the system (FDA; big Gov) who was explicitly chosen to revamp FDA in favor of patient interests. As for me, I would like to dispel of ALL medical journal paywalls, since they hurt patients first and foremost!


ePatientDave
@epatientdave

Posts: 58
Joined: Apr 29, 2011
Posted by @epatientdave, Dec 16, 2015

Well this is fascinating – on Facebook when I groused about this, Nick van Terheyden (a long-time friend, now head of health at Dell) posted this link to the PDF of the full article, on someone’s website! What the heck is THAT? http://www.nationalhealthcouncil.org/sites/default/files/Engaging-Patients-JAMA.pdf

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