E-patients.net = suggested reading
Gretchen Berland is one of my heroes, so I was thrilled when she asked me to give a guest lecture at Yale. Then I read the syllabus for “Media & Medicine in Modern America.” It’s too cool to keep to myself… Read more
“Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”
Cross-posted, with prolog, from the blog of Ted Eytan MD.
Yesterday the Institute for Healthcare Improvement’s “WIHI” series hosted a terrific webcast on the Open Notes project that’s being funded by the Robert Wood Johnson Foundation. (I need to dig up the link to the event’s archive, but I’m in a hurry.)
Speakers were Dr. Tom Delbanco of Beth Israel Deaconess Medical Center (a pioneer of patient access), Dr. Mary Merkel of Dartmouth-Hitchcock, and Bob Desaulniers, a patient of Dr. Merkel’s who lives in my own town, Nashua NH. Gotta go meet them!
Inevitably we revisited the hoary concerns about the horrible things that will happen if we see our health data. Dr. Delbanco cited a paper from the 1970s that advocated giving patients their medical records. And this morning Ted Eytan dug it out.
In this era of evidence-based medicine, isn’t it time for policy makers to look at this evidence?
Ted’s post:
Read more
A new blog worth noting: “Evidence In Medicine”
Understanding medical research, at some level, is a fundamental e-patient skill. As we start digging for reliable new information, we have to learn to separate quality from questionable. (If you think medical journals are academically pure, you’ve got learning to do.) A new blogger has emerged who’ll be a big help: David Rind, MD. Read more
A quote I won’t soon forget
Marcia Angell MD is a well-known, respected physician, long-time editor of NEJM. So it was a bit of a shock today when Amy Romano, blogger for Lamaze International, sent me this quote:
It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.
From Drug Companies & Doctors: A Story of Corruption in The New York Review of Books, around New Year’s.
Dana Blankenhorn of the ZDNet health blog called it “a bombshell.” I couldn’t agree more. And I must say, with all the smart people in this community, why on earth haven’t we heard more about this??
And how on earth are we supposed to be empowered participatory patients if we can’t trust the world’s leading journal?
For one thing, we can have our eyes wide open about the evidence we’re supposed to trust. Get educated. Learn how to read health news reporting – including the journals. Wise up.
Think critically. It’s a fundamental part of being an empowered patient.
_____
Related reading:
No *other* conflict of interest, huh? (11/08)
Negative data on Seroquel suppressed by manufacturer (2/09)
Dr. Reuben deeply regrets that this happened (3/09)
e-Patient Training Topic: National Article Reports Relative Risk, Not Raw Data.
Important update: it turns out the writer did get it right, and this was an editing error at the Boston Globe. See my comment August 17.
—–
As empowered, engaged patients we have a responsibility to evaluate the articles we read. A case in point is this week’s Associated Press article Any Spread Of Breast Cancer Raises Risk Of Return. It’s about a paper in this week’s New England Journal of Medicine that found a 50% increase in the chance of cancer recurring, and quotes an expert as saying
“I think it will influence treatment. If we’re considering treating the patient, we probably should.”
Can you spot the flaw in that reasoning, if all you have is that number? That’s all the article reported, and that’s a problem.
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e-Patients:
How They Can Help Us Heal Healthcare
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