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...
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...
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...
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....
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...
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...
by Sarah Greene | Jan 31, 2012
NOTE: We’re happy to welcome back Sarah Greene, one of the founding members in 2009 of SPM and its journal. She left a while ago for London, where she’s continued her work at the leading edge of thought about medical knowledge. Sarah is ahead of most of...
by e-Patient Dave | Dec 2, 2011
A prime benefit of individual membership ($30) in our Society for Participatory Medicine is the right to participate in our members-only listserv. It was pretty sleepy a year ago, but these days it’s a hotbed of juicy discussions. Here’s something that...
by e-Patient Dave | Nov 30, 2011
We’ve often cited Gary Schwitzer’s Health News Review (@HealthNewsRevu on Twitter) as an invaluable e-patient resource. With a structured ten point evaluation process, the site’s many trained reviewers evaluate the reporting of health news. We...
by e-Patient Dave | Nov 25, 2011
Wow. Todd Park, Chief Technical Officer at HHS, ought to be jumping out of his skin with joy at this one. This time, House, M.D. fans, it was lupus. The article “Evidence-Based Medicine in the EMR Era” published in the Nov. 10 issue of the New England Journal of...
by e-Patient Dave | Oct 22, 2011
Corrections 8:45 pm ET Monday 10/24: This post’s title originally said HHS was seeking patients. Actually it’s PCORI, a new non-government agency, as described below. Both affect the future of healthcare, but PCORI isn’t part of HHS. The title also...
by e-Patient Dave | Oct 5, 2011
We’ve often said here that when an e-patient wants to be responsible for treatment decisions, it’s essential to know how to evaluate the research about each option. A common mistake is to trust, blindly, news reports about a treatment, or even to trust,...
by e-Patient Dave | Sep 10, 2011
This is a guest post by SPM member John Sharp, Manager of Research Informatics at the Cleveland Clinic. John gets it about how information empowers healthcare and e-patients. I first met him at Medicine 2.0 in Toronto, 2009, after which he wrote an article for our...
by e-Patient Dave | Aug 30, 2011
SPM member John Novack of Inspire.com sent this, about a project some members of an Inspire patient group created. They got the Mayo Clinic to explore whether a clinical trial can be done in a very unconventional setting: across the internet, instead of within one...
by e-Patient Dave | Aug 7, 2011
An SPM member [name redacted – wishes to remain anonymous :–)] emailed this, with the playful subject line “A New e-Patient”: (Click the image to go to the high-res on the comic’s site; © Copyright 2011 King Features Syndicate, all rights...
by John M. Grohol, Psy.D. | Jul 24, 2011
I’m all for citizen journalism, and can even stand the content mills like LiveStrong, who have pimped out their name and brand in order to make a quick buck. But I draw the line with bad reporting and worse, biased representation of the data to prove a point....
by e-Patient Dave | Jun 7, 2011
This guest post by SPM member Peter Schmidt is long overdue. I asked him to write it months ago after discussion on our post Tips for Understanding Studies (Health News Review). Apologies for the delay. If you’d like to submit a guest post, see our guidelines. I...
by e-Patient Dave | May 22, 2011
The Society for Participatory Medicine was well represented last week at the 14th ICSI/IHI Colloquium. (ICSI is the Institute for Clinical Systems Improvement, a small midwestern think tank that’s way too poorly known.) SPM members who presented: Jane...
by Susannah Fox | Mar 10, 2011
This is a guest post by Jessica Mark, healthfinder.gov and Outreach Program Manager, Health Communication and eHealth Team in the Office of Disease Prevention and Health Promotion at the U.S. Department of Health and Human Services We all struggle with complex health...
by e-Patient Dave | Jan 29, 2011
We’ve recently been talking here about problems with poor study design in clinical trials. A health IT version of this problem raced through the newswires this week while I was on the road. The news coverage was particularly naïve, illustrating our point....
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