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Facial Paralysis, Not Personality Paralysis

by Susannah Fox | Jul 15, 2012

Anyone who has doubts about including patients’ input in research studies should talk with Kathleen Bogart, PhD. She focuses on the social ramifications of facial paralysis, both congenital (like Moebius Syndrome) and acquired (like the often partial facial paralysis...

Send a message to the White House: Show strength of support for Open Access

by Gilles Frydman | May 24, 2012

Update 1 June 3: if you’re not familiar with the Open Access issue, start with Peter Schmidt’s comment below, citing a 2008 journal article on the issue, by a former editor of the British Medical Journal. ___________ Update 2 June 3 @9:50 AM PST: we are...

Former NEJM editors on the corruption of American medicine (NY Times)

by e-Patient Dave | Mar 20, 2012

This is longer than it might be, because this point is essential. If this subject is familiar to you, skip to the heading “Today’s update.” As we said in December, an e-patient essential is sorting out what writings to trust, whether we find them...

Patients: Your Researcher Will See You Now!

by Kathleen O'Malley | Mar 13, 2012

Guest blogger Susan Woods, a physician and SPM board member, urges patients to help shape PCORI’s draft National Priorities for Research and initial Research Agenda, and offers her own comments here. The public comment period ends at 11:59 pm EST on March 15....

What’s the future for self-tracking?

by Susannah Fox | Mar 9, 2012

Stephen Wolfram’s essay, The Personal Analytics of My Life, begins: “One day I’m sure everyone will routinely collect all sorts of data about themselves.” A Pew Internet survey suggests we have a long way to go: a September 2010 survey found that 27% of internet users...

Save the Date: PCORI’s National Patient and Stakeholder Dialogue

by Kathleen O'Malley | Feb 13, 2012

We encourage our readers to attend this February 27 event and help PCORI shape its agenda for clinical effectiveness research. You can find a link to their draft priorities by clicking to this page. Registration for the forum is required; please see the link in the...