My friend and colleague Dave deBronkart, aka “e-patient Dave,” was interviewed by the Boston Globe about his experience setting up personal health records at Google Health, which I blogged about last week. The gist is that Dave is an early adopter using a very new kind of system. Most hospitals don’t even have sophisticated digital records-keeping systems. The Google Health folks say “the records will improve as more precise coding language is adopted in the coming years.” Meanwhile e-patients like Dave will be pushing for better access to better information.
Author: Jon Lebkowsky
Co-wrangler of Plutopia News Network, cohost Radio Free Plutopia. Podcaster, writer, dharma observer, enzyme. Former editor/publisher, FringeWare Review; associate editor at bOING bOING and Factsheet Five; writer at Mondo 2000, 21C, Wired, Whole Earth Review, Austin Chronicle; sub-editor at Millennium Whole Earth Catalog; blogger at Worldchanging. Digital culture maven, podcaster, writer, dharma observer, enzyme. On The WELL, Cohost of VC (virtual communities), Media, and Civil War (.ind) conferences.
Heckle and Jeckle
Magpie is troubling: “Allow us to embed our customers’ messages (aka spam?) in your Twitter timeline and earn money. Crass and inauthentic. Hoping anyone who signed up to have their Twitter feed hijacked by advertisers/spammers is thinking twice – Magpie will only work with adoption. I learned about this “service” from a post at ReadWriteWeb: “It’s so revolting and pitiful that it’s kind of sad.”
Should this really bother me? Well, yeah – I’ve invested much of the last two decades in my life online, and some significant percentage of that time evangelizing for an Internet that doesn’t go where commercial television, ultimately, went: ads interspersed with content. We’re not even sure that advertising works, certainly less so than before. At least with placement services like Google the ads have been subtle and generally out of the way. A redundant ad message popping up on every third tweet at Twitter would be rather completely unsubtle, potentially killing the goose.
In my life as a consultant, much of what I do is advise how to use the web to meet various business goals, and that’s often about making money, including sales, marketing, and advertising. If someone like Apple or Skype (users of the Magpie service) asked me about feeding canned ad messages into Twitter via Magpie, I would say “you’ll piss people off.” The weird and unfortunate thing about this kind of inauthentic brute force advertising is that, while it often does piss people off, it also somehow manages to increase sales. If statistics didn’t show that result, nobody would do it. All advertising would be tasteful and wonderful, authentic and well-placed. It’s a dilemma.
(In case you’re wondering about the title of this post, it’s a reference to the once-famous cartoon magpies.)
I’m not so sure about the good-bad thing…
Sex, beer, wine, pot… and maggots! Top 10 bad things that are gooood for you. (Via Lane Becker!)
They’re creepy, slimy and altogether ooky, but maggots can save your life. These squirmy larvae are science’s newest wonder-cure and were approved in 2003 as the Food & Drug Administration’s only live medical device. Placed on serious wounds, maggots mimic their “wild” lifestyle and munch on bacteria and dead tissue, stimulating healing and helping to prevent infection.
Personal health records: the data’s not in (really)
A PHR (Personal Health Records) system like Google Health supposedly “puts you in charge of your health information,” but where do you start? ePatient Dave e-patients.net, decided to take the plunge and move his considerable (after bouts with cancer) health data to Google’s system. His hospital was already supporting easy upload of patient records to Google Health, a matter of specifying options and clicking a button at the patient portal.
The result? “…it transmitted everything I’ve ever had. With almost no dates attached.” So you couldn’t tell, for instance, that the diagnosis of anxiety was related to chemotherapy-induced nausea: “… the ‘anxiety’ diagnosis was when I was puking my guts out during my cancer treatment. I got medicated for that, justified by the intelligent observation (diagnosis) that I was anxious. But you wouldn’t know that from looking at this.”
Where there was supposed to be “more info” about conditions listed, the information wasn’t particularly robust, and some conditions were listed that Dave never had.
I’ve been discussing this with the docs in the back room here, and they quickly figured out what was going on before I confirmed it: the system transmitted insurance billing codes to Google Health, not doctors’ diagnoses. And as those in the know are well aware, in our system today, insurance billing codes bear no resemblance to reality.
All this raises the question, and the point of Dave’s post: do you know what’s in your medical records? Is it accurate information? If some physician down the line was reading it, would (s)he make an accurate assessment of your history?
Think about THAT. I mean, some EMR pontificators are saying “Online data in the hospital won’t do any good at the scene of a car crash.” Well, GOOD: you think I’d want the EMTs to think I have an aneurysm, anxiety, migraines and brain mets?? Yet if I hadn’t punched that button, I never would have known my data in the system was erroneous.
Dave realized that the records transmitted to Google Health were in some cases erroneous, and overall incomplete.
So I went back and looked at the boxes I’d checked for what data to send, and son of a gun, there were only three boxes: diagnoses, medications, and allergies. So I went back and looked at the boxes I’d checked for what data to send, and son of a gun, there were only three boxes: diagnoses, medications, and allergies. Nothing about lab data, nothing about vital signs.
Dave goes on to make a rather long and magnificent post, which you should read (here’s the link again). The bottom line is that patients need working, interoperable data, and patients should be accessing and reviewing, and there should be methods for correcting factual inaccuracies.
We’re saying this having heard that most hospitals aren’t storing data digitally, anyway. This is new territory and we know we have to go there. Salient points:
- Get the records online
- Make sure they’re accurate
- Have interoperable data standards and a way to show a complete and accurate history for any patient
- Have clarity about who can change and who can annotate records
That’s just a first few thoughts – much more to consider. If you’re interested in this subject, read e-patients.net regularly.
Thinking about education
Jamais Cascio ponders education, saying first that we need more Sids than Andys, a Toy Story reference. Sid was, according to the Wikipedia article, “hyperactive” and “disturbed.” Jamais quotes another perspective. “A Sid-based education would encourage children to invent and explore, to chart their own paths, to defy conventions, to explore dead ends as well as promising boulevards.” I get the point, though I’m not sure that’s Sid… hmmm.
Later in the post, he links to a page by KnowledgeWorks Foundation and the Institute for the Future: “Creating the Future of Learning,” quoting this page:
We are seeing “educitizens” define their rights as learners and re-create the civic sphere. Networked artisans and ad hoc factories are democratizing manufacturing and catalyzing new local economies. These creators are highlighting the significance of cooperation and cross-cultural intelligence for citizenship and economic leadership.
Furthermore, advances in neuroscience are creating new notions of performance and cognition and are reshaping discussions of social justice in learning. Communities are beginning to re-create themselves as resilient systems that respond to challenges by replenishing their vital resources and creating flexible, open, and adaptive infrastructures.
Together, these forces are pushing us to create the future of learning as an ecosystem, in which we have yet to determine the role of educational institutions as we know them today.
Pondering this – it’s what we should be thinking about.
National Broadband Plan (hooray)
Finally, historically, the FCC is working on a national broadband plan. “Why: President Obama considers broadband to be basic infrastructure, like electricity and water, and wants the FCC to do what it can to help drive adoption rates across the USA.” This is what the Freedom to Connect crowd (including yours truly) and the community networking activists have been saying for years. It was delayed for years because “under President Bush, broadband was considered a luxury, and received light government attention as a result.”
That buzzing sound…
Geographers are researching buzz, according to this New York Times article (thanks to the phenomenal Oliver Markley for the pointer). They’re creating a study and an exhibit, both called “The Geography of Buzz,” and in the process finding that buzz is hard to define explicitly. “Rather, like pornography, you know it when you see it.”
As a digital guy, I looked for the tech implications:
… the geo-tagging represents a new wave of information that can be culled from sites like Flickr and Twitter. “We’re going to see more research that’s using these types of finer-grained data sets, what I call data shadows, the traces that we leave behind as we go through the city….They’re going to be important in uncovering what makes cities so dynamic.”
“People talk about the end of place and how everything is really digital. In fact, buzz is created in places, and this data tells us how this happens.”
The geographers have some very cool buzz maps.
Memories are made of this
Researchers are learning how memory works, via PKMzeta molecules that facilitate “speed dialing” among brain cells, “like a group of people joined in common witness of some striking event.”
Call on one and word quickly goes out to the larger network of cells, each apparently adding some detail, sight, sound, smell. The brain appears to retain a memory by growing thicker, or more efficient, communication lines between these cells.
By manipulating PKMzeta, it may be possible to edit memories, which “raises huge ethical issues,” according to Dr. Steven E. Hyman, a neurobiologist at Harvard. While you might be able to remove traumatic memories, the drug could be misused to eliminate memories that support moral conscience. [Link]
Fixing the car while it’s moving
James Suroweicki talks about the Obama Administration’s tough balancing act when it comes to bank regulation. It has to fix the current crisis on the one hand, and it also want’s to prevent another, similar crisis later (acknowledging this is the third in three decades). Do critics get the full complexity of the problem?
Britannica’s overhaul
Encyclopedia Britannica’s having an overhaul, and crowdsourcing part of it with contributions from paid subscribers. But Britannica’s President insists they’re not following the Wikipedia model. [Link]
”I don’t believe it’s accurate to say that Britannica and Wikipedia are becoming more similar,” he said. While Wikipedia is written and edited by amateurs who often work anonymously, Britannica Online articles will be overseen by professional editors. In addition, there will be no anonymity: Authors and editors will be identified by name. Cauz said this will give Britannica Online articles a credibility and authority Wikipedia can’t match.
Humans and tools
From Kevin Kelly: an overview of human history and some thoughts about the relevance of language as the original social media.
Language accelerates learning and creation by permitting communication and coordination. A new idea can be spread quickly by having someone explain it and communicate it to others before they have to discover it themselves. But the chief advantage of language is not communication, but auto-generation. Language is a trick which allows the mind to question itself. It is a magic mirror which reveals to the mind what the mind thinks. Language is a handle which turns a mind into a tool. With a grip on the slippery aimless activity of self-reference, self-awareness, language can harness a mind into a fountain of new ideas. Without the cerebral structure of language, we can’t access our own mental activity. We certainly can’t think the way we do. Try it yourself. If our minds can’t tell stories, we can’t consciously create; we can only create by accident. Until we tame the mind with an organization tool capable of communicating to itself, we have stray thoughts without a narrative. We have a feral mind. We have smartness without a tool.
There’s quite a bit more, and it’s worth reading to discover why Kevin concludes “In a world without technology, we would not be living, and we would not be human.”
Into the image of sunset
Here’s a slide show from The Museum of Mondern Art’s exhibit, “Into the Sunset: Photography’s Image of the American West.” Read about it here.
It divides up into landscapes and images of people, with subdivisions devoted to different types of images. One group of landscapes focuses on awesome natural beauty while another documents the havoc wreaked on nature by industrial development. People in one section exemplify a pioneering spirit; elsewhere we encounter portraits of wasted human potential. Provocative and amusing conversations between images occur throughout.
Confessions of an Ozzy clone
My dangerously whacky friend Don Wrege was often mistaken for Ozzy Osbourne, and he found that resemblance marketable when Ozzy’s celebrity was boosted by MTV’s reality series, “The Osbournes.” Don’s written a book about his Ozzy-clone experiences, called My Year as Ozzy, published by Mediawhore Press (natch) and available via Amazon. He gets five stars, so the book’s obviously not horrible.
The quintessential geek couple, completely and inalterably married-for-life
Our friends and sometimes houseguests, Bruce Sterling and Jasmina Tesanovic, are facing an immigration hassle. Says Bruce, “We have no joint bank account, no insurance accounts and no joint children. The authorities therefore suspect that our marriage is a phony ‘Green Card marriage,’ and they would like to have Jasmina deported from the USA.”
Note to the harried couple: send INS our way, we can certainly verify your persistent, more or less blissful marital status…
