Once the world’s information was put into context, we looked beyond the keyboard, and collectively shifted to people. We focused on social context by asking questions like: Who are you? How are we connected? What is on your mind? What matters to you?

Making the Internet more social enabled people to share their real name, likeness, voice, and the things that they are connected to. Now we always have an understanding of who is talking, who and what they are connected to, what they are saying, and to whom; through understanding identity and social context we have achieved greater openness as a society.

DAVE MORIN

Internet Entrepreneur; Co-Inventor, Facebook Platform and Facebook Connect

In “Context Is King“

Two of the last three posts on this blog got conversations going on steroids. In both instances the genesis of the overdrive is a commenter that appears under the username DarthMed. Surprisingly, DarthMed is the ONLY commenter in both conversations who didn’t offer a link to a website where we can understand a bit about his/her background and expertise. This is an immediate red flag in my world. Anonymous comments in blogs are IMO not acceptable. As Jaron Lanier writes in his latest book, “You are not a gadget”:

“Anonymous blog comments, vapid video pranks and lightweight mashups may seem trivial and harmless, but, as a whole, this widespread practice of fragmentary, impersonal communication has demeaned personal interaction.”

One of the points I make most often about ACOR success in promoting high level conversations is that we do not tolerate anonymous conversations. When you discuss issues that often have life and death implications you must use your real name. That is a pre-requisite for trust.
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When Benn Rosales had a heart attack in December, his wife Lani, a very active member of the Twitterati, tweeted throughout the experience. Afterward she thought to compile those tweets as a record of Benn’s e-patient experience: “this hospital is understaffed and we’re being sh*t on because of it. if my husband dies i’m going to go [eff]ing ballistic.” Here’s the story, told in tweets, largely unedited…

http://twitter.com/LaniAR/status/6752311191

dear ER, oh.em.gee.you.are.sooo.slow. please be less slow. love, lani.
9:10 PM Dec 16th, 2009 from web

http://twitter.com/LaniAR/status/6752565073

@jburslem @K2daV @matthew_parente thanks. you guys are wonderful hopefully we can go home tonight in time for jimmy fallon
9:19 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6753414164

RT @BennRosales: if i keel over tonight @laniar gets everything signed me will by tweet. [I'm putting TEN Realtor logos on ur grave!]
9:49 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6753425383

okay, finally in triage, @bennrosales being questioned.
9:50 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754309460

oh jesus, it’s blood test and ct scan time. we should take bets on diagnosis so we can pay this damn ER bill…. who’s in?
10:29 PM Dec 16th, 2009 from TweetDeck
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Re Time’s article “Group Therapy” in the February 8, 2010 issue, arriving on newsstands now:

Time’s freelance reporter Bonnie Rochman contacted our Susannah Fox to discuss her remarks at the Institute of Medicine last October. Read more…

…The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

Someone going by the name Darthmed posted that comment yesterday and it stopped me in my tracks.

It is my job (literally) to measure the impact of the internet on society and contribute data to the public conversation. I analyze survey data, write reports, answer reporter’s questions, and speak at conferences where people either know too much about what I study or know so little that I come off as some kind of oracle from the Interwebs. Read more…

Update: Roni Zeiger of Google Health emailed me and gave permission for me to post the following statement, which I think is a helpful addition to the conversation:

Health information is obviously an important category of information users are looking for. For this health search feature we decided to offer users one source each from a governmental health agency, a medical institution, and a commercial site. We’ll study how users like these choices and continue to iterate. None of these sites is paying any money to Google to be included in the feature. Google is 100% committed to ranking websites objectively to provide the most relevant information to users. Websites cannot pay for higher search rank.

——–

Eric Schmidt wants to solve health care’s “platform database problem” and one critic has  countered that “computers cannot practice medicine.” One of Google’s initiatives is to guide consumers to safe, trusted health websites. Is that such a bad thing?

Search result placement can make or break a site or a business model, which is where dot-com blogs come in, but they also have the potential to make or break a consumer’s access to health information, which is where e-patients.net comes in.

First, some background. Search is central to health information gathering: Two-thirds of consumer health inquiries start at a general search engine. The trend line for consumers’ reliance on health search is so steady, in fact, that Pew Internet stopped updating it in 2006. Other researchers seem to take search dominance as an article of faith, too: Harris Interactive, Manhattan Research, Center for Studying Health System Change, National Cancer Institute’s HINTS – none have recent data on health search, at least on their public sites.

What has changed are the search results. Read more…

This is a guest post from Christine Kraft, Twitter friend @ChristineKraft. She’s a pensive, musey blogger at CocoVillage, and “wicked smaht,” as we say in Boston. She’s also the one who introduced us to Regina Holliday last year.

She recognizes talent when she sees it – and here, she plays the role of patient as ingenue, imploring the care team to take the leash off her potential.
__________

An appeal for Participatory Medicine,
inspired by Diva e-Patient friends and colleagues:

Dear Wonderful Doctor and Care Team,

I am writing to suggest that you cast me in the most important performance of my life: My Health Care Crisis.

I realize you hardly know me and that you can’t really stop to get to know me at this point because there is a long line of folks just like me waiting for your services… But since we’re suddenly on a kind of “Fast Track” to get to know my body (given last week’s diagnosis), I was hoping that you’d at least consider giving me a supporting role in my upcoming treatment.

I’ll play it straight; no Femme Fatal, Gypsy Rose Lee, or Little Lost Soul. Nope, I’ll go for a completely modern (dare I say, “sexy”) evolving archetype, The Empowered Patient.

I am sure you have questions. And yes, I am a rookie. I cannot predict with the exactness of a doctor like you the outcome of my involvement in my care. But acknowledging that I have a role would be a powerful component in the show. And this is a kind of show, Doctor, isn’t it?

What do you say? Can you accept a wee bit of showmanship from the patient side while you miraculously cut that large tumor out of my endometrial liner and administer powerful technology reserved for only the most specially trained among us? This *is* high drama but I promise I won’t be too saccharine or too melancholy. I’ll take the pain meds as directed and open up to the fear as best as I can.

Doctor, if I haven’t made it precisely, exactly, clear to you yet, I think we make a great team. You’ve gotta let me show you what I’ve got.

Sincerely,
Your Patient

Originally posted on her blog, 1/8/2010.

This is a guest post by Lucien Engelen (Dutch Twitter friend @Zorg20), who was featured in October’s The internet is changing healthcare – video from Reshape09. Here, he takes it to the next step, moving from health 2.0 to “health 2.010”.  I love it! - Dave
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Back in September, Jonathan Rauch of the National Journal wrote a terrific (fact-based!) send-up of our archaic, arcane, not-customer-centric healthcare system, titled “If Air Travel Worked Like Health Care.” I wish I’d known about it then, but I only learned of it recently, because a couple called “The New Altons” have made a great home-brew video of it, and posted it in YouTube.

Well, now it’s going viral, at least among the healthcare crowd on Twitter. Fasten your seatbelts.

The closing frame says it’s made by Mary & Peter Alton. It appears to be Twitter user @PeterAlton. Follow him, and thank him.

p.s. Never have I seen a better example of how an entertaining video can transform the reach of a good message.

Jen McCabe and Regina Holliday

Elizabeth Cohen, CNN Senior Medical Correspondent, captured the zeitgeist of the health data rights movement in today’s must-read article, Patients demand: ‘Give us our damned data’. An e-patients all-star team is quoted in the story: Jen McCabe, Regina Holliday, e-Patient Dave, Alan Viars.

The following is the proposal I submitted Tuesday, to speak at O’Reilly / TechWeb’s Government 2.0 Expo, May 25–27 in Washington.
______________________________

The Invisible Stakeholder:
Why America Needs a Patient-in-Chief

“These are exciting and very promising times for the widespread application of information technology to improve the quality of healthcare delivery, while also reducing costs, but there is much yet to do, and in my comments I want to note especially the importance of the resource that is most often under-utilized in our information systems – our patients.”
– Charles Safran MD, testimony to the House Ways & Means subcommittee on health [Emphasis added]

Quite current, yes?  No: Dr. Safran said those words in June 2004.¹ And not much has changed.
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