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
Keep an eye out for tomorrow morning’s post
In our “Why Participatory Medicine” series, leading up to the October 21 launch of the Journal of Participatory Medicine, tomorrow’s guest post will be a special treat for me. It contains a breakthrough insight about participatory medicine, and it’s a perfect example of how social media is enabling a wildfire acceleration of the spread of ideas.
The author is Amy Romano @MidwifeAmy, a nurse-midwife and advocate for mother-friendly maternity care. An expert in research analysis, she manages the Science & Sensibility blog for Lamaze International. Read more
Participatory Medicine around the world: the Seven Preliminary Conclusions reach India
A Google alert popped up today, saying that a participatory physician in India had cited this blog. Don’t we love it when social media let empowering information spread! It’s exactly what our founder “Doc Tom” predicted with his now-famous 1995 triangle slides: the internet gives us access to information and to each other, which puts a whole lot of power in hands where it didn’t use to be.
In this case, the doctor picked up one of our classic posts, the Seven Preliminary Conclusions from the e-patient white paper, which was written before I’d ever heard the word “e-patient.” As we approach the October launch of the Journal of Participatory Medicine, I re-read that post and found renewed meaning. Here it is. Read more
Civil rights activist Dorothy Tillman vindicated
a year after arrest for demanding medical records
Important addition 7/16/09 6:40 pm EDT:
Be sure to read the HIPAA clarification by commenter “SLC” below, and any subsequent discussion. Dorothy Tillman was requesting her aunt’s records, not her own. This doesn’t change the need (IMO), but it does put a different light on the event.
This is a tiny item, which we might normally put in our “Found On The Net” sidebar. But this is a big one, and a sign of things to come.
We missed it at the time, but Vince Kuraitis’s must-read blog related in March that a year ago…
Frustrated after an overnight stay in the ER which she said yielded “little treatment”, she requested a copy of her aunt’s medical records before leaving. When she was told that it was hospital policy to request records “in writing”, Dorothy escalated her requests for the records. Refusing to leave without the records, she was brought to the floor by security guards and arrested on charges of criminal trespassing….
Vince relates how today’s HIPAA regulations, written in the stone age (relatively), says providers must give you your records, but they can take a month to do it. (And if they want, they can say that’s not enough and take another month.) When someone needs care, that’s not enough.
Significantly, last Friday the Health Data Rights movement gained its 1,000th endorsement. A movement has started. Add your name!
EMRs: “Would you take it if it were FREE?”
Blogger John at the “EMR (EHR) and HIPAA” blog posted a musing that caused my business antennas to twitch. A vigorous discussion has started in the comments.
Read more
Next stage in mapping my hospital’s clinical data to PHRs
John Halamka’s blog has a new post today announcing that the National Library Medicine has mapped 93% of his hospital’s “problem list” codes to the SNOMED CT set of clinical data codes that’s widely used.
For more info on data formats see our post on data vocabularies.
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