“You’re 100% alive or 100% dead at any given moment”
A recurring training topic on this blog, originally for e-patients but also for clinicians and policy people, is understanding statistics. (See posts in that category.) Not only are statistics often misinterpreted; even when they’re correctly understood, patients too often interpret a slim chance as no chance.
During my illness I heard from a long-ago co-worker. A cancer patient herself now, she recently wrote that while sitting in the chair getting chemo, she found this splendid and empowering tidbit :
What I think I learned is, you’re either 100 percent alive or 100 percent dead at any given moment,” says Meg Gaines, whom doctors gave a 5 percent chance of surviving [ovarian cancer]. “What statistics tell you is whether you’re in a great big fight, a medium-sized fight, or a little fight. People win and lose all three, so it just tells you what your fighting mind-set is.
“It tells you what level of risk you’ll take in treatment. It informs things. But I don’t think it’s very helpful on the ultimate question: Will I stay or will I go?”
Excerpted in Utne magazine, March-April 2010, pp. 71-73, from On Wisconsin (Winter 2009), www.uwalumni.com/onwisconsin.
National Library of Medicine’s ePatient Conference
The e-patient movement is so real that in April the National Library of Medicine had its first ePatient Conference. Yes, that’s what they called it. The event is covered on the inside front cover of the current Medline Plus, including Society co-chair e-Patient Dave. More info on Dave’s blog.
“The stage is being set for patient-driven disruption”
The e-Caremanagement blog has released my post that we mentioned last week: “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation. It’s part 5 of their excellent series (really, excellent) “Is HITECH working?” As I said then, if you’re into health IT, please catch up on this series – their earlier installments are clearly written and well thought out.
Joe Kvedar’s “cHealth blog” (Connected Health)
We’re long overdue in welcoming Joe Kvedar MD of Partners Healthcare to the blogosphere. From his About page:
“The term “connected health” reflects the range of opportunities for technology-enabled care programs and the potential for new strategies in healthcare delivery.
“A division of Partners HealthCare, the Center for Connected Health works with Harvard Medical School-affiliated teaching hospitals, including Massachusetts General and Brigham and Women’s Hospitals. I am also active in my specialty of Dermatology both as a clinician and educator.”
Dr. Kvedar is also on the Editorial Board of the Journal of Participatory Medicine.
His new blog, about connected health, is The cHealth Blog. Mazel tov!
Testimony submitted to the Meaningful Use workgroup (and an urgent call for citizen participation)
There’s an important call to action below. If you care about making healthcare more responsive to us, and less responsive to vendors, please read to the end. This is short.
Thanks to all of you who submitted comments on this week’s post, offering feedback. Here is the PDF I submitted today, which is being distributed to all members of the Meaningful Use workgroup.
Full text of original comments received here by the deadline were included in Appendix A, along with a link to that post so interested readers can see subsequent discussion and any later comments. Keep ‘em coming!
Want to know how cool this community is? We had several times more responses on this subject than were received by the similar post on The Healthcare Blog – and none of theirs had actual feedback! (Just the usual THCB kvetching.:–))
More importantly, consider how vital this work is. To quote from Matthew Holt’s post over there: Read more
e-Patients, send video messages to @Berci’s med students
If you haven’t found him yet, Bertalan Meskó is one of the best new-generation doctors making the most of social media. While he was still a med student his ScienceRoll blog won Blogger’s Choice in 2007, and last month it won Medgadget’s prestigious Best Medical Technologies/Informatics Weblog for the second year in a row. @Berci, as he’s known on Twitter, provides a glimpse of what healthcare will be like in the coming decades.
Now that he’s become an MD and is teaching, he’s taking it to the next step, inviting e-patients to talk directly to his students via YouTube. He posted an invitation on his site, and he welcomes cross-posting it here and elsewhere. Upload to YouTube, tagged with “med20course.” (That’s a zero after the 2.)
Here’s famed SixUntilMe diabetes blogger Kerri Sparling’s contribution. It’s got almost 800 views already.
Journal of Participatory Medicine cited on Scientific American blog
Scientific American writer Robin Lloyd (Twitter: @RobinLloyd99) has written a nice, clear, hit-the-nail-on-the-head post on their blog about our Journal of Participatory Medicine.
Engage With Grace
Alexandra Drane and her team have a new post on The Health Care Blog about how to put this holiday to work in a new way. Here’s a snippet:
Some conversations are easier than others
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important. To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:
1) On a scale of 1 to 5, where do you fall on this continuum? 1 = Let me enjoy the holiday season in glorious solitude — just me, a mug of hot cocoa, and a good movie. 5 = Bring it on — the in-laws, the misbehaved children, and the mountains of dirty dishes!
From Ted Eytan’s blog: “Now Reading: Patients actually want their entire medical record”
An important study just got my attention. Patients and clinicians in different cities were asked questions about concerns and preferences. Titled “Insights for Internists: ‘I Want the Computer to Know Who I Am’,” the study reports: (emphasis added)
- Patients do keep their own medical records
- They want access to everything in their record
- Privacy worries “appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers”
“health professionals professed far more concern about maintaining privacy than patients.”- They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less
Boy do I wish we’d all known about this during the debates about meaningful use and medical records this summer! There was so much talk about “Well what do people want?” and “Won’t patients be overwhelmed? They won’t be able to understand it.”
And here’s the thing: it was published back in May, and the research was done THREE YEARS AGO, Nov. 2006 to Jan. 2007.
How’s that for a great example of the “lethal lag time” we talk about in the e-patient white paper? That’s the delay between when new knowledge comes into existence and when it’s made its way through the publication system, for use by decision-makers. Three years, in this case.
Thanks to the always magnificent, e-patient-minded Ted Eytan, MD for highlighting this study on his blog Friday.
“Doctors Are Killing Their Profession, the Healthcare System and Their Patients with Paternalism”
That’s the strongest language yet in our “Why Participatory Medicine” series. And it’s not our words – it’s the words of a board certified neurosurgeon after he heard the Participatory Medicine message at Medicine 2.0 last month. The message echoed his thoughts, and he blogged about it.
The “DocPatient” blog, by Dr. Louis Cornacchia of Doctations, has quite a tagline:
Internet healthcare is inevitable. Done right, it can initiate enormously positive change in the U.S. healthcare system. The only way for it to be done right is for doctors and patients to work together to make it happen.
Sounds like participatory medicine to me!
And my Google Alert just popped up a post he wrote shortly after the conference: “Doctors Are Killing Their Profession, the Healthcare System and Their Patients with Paternalism.” Even I wouldn’t put it that strongly, but then I’m not an MD – and I’ve certainly never been through medical training, about which he says:
Every day, medical schools indoctrinate upcoming doctors with paternalistic behaviors. “Your patients don’t want to know the details, they want to get well, its your responsibility to make them well.” “You, doctor, should shoulder the responsibility.”
About paternalism itself, he continues: Read more
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