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.

The manifesto that made my day

Earlier today I listened to a Buddhist Geeks talk with Stephen Batchelor, who said he was pretty sure there is no god… but then Chris Carfi sent a link to an email list we’re on that aligned so completely with where my life has been going that I thumbed my nose at Batchelor. There clearly is a god, and he made sure that I saw Maureen Johnson’s manifesto today: I AM NOT A BRAND. Have you read it? If not, stop now, go read it, then come back and we’ll talk.

“We can, if we group together, fight off the weenuses and hosebags who want to turn the Internet into a giant commercial…”

The rest of this is about me, and who cares? But I do want to download a bit and make a point.

All I’ve wanted to do for the last couple of decades is help people have meaningful conversations and solve problems together, i.e. build communities and organize effective collaborations. I’ve been in conversatoins about this with all sorts of people, including conversations in the early 2000s about social software and online social networks and how the web that was evolving – conversations captured to some extent in the collaborative paper “Emergent Democracy” that I had worked on with Joi Ito and others, and the post by Tim O’Reilly and Dale Daugherty that described “web 2.0.” I spent a lot of time thinking about political uses of the technology, with the Howard Dean campaign as a laboratory, and co-edited a book about social technology and politics called Extreme Democracy. About four years ago I was working on a consulting methodology that would help people leverage their physical and online social networks more effectively, and while I was working on this people started talking about social media. Specifically social media marketing.

I understand social technology and I get why the social web is attractive and compelling and starting to get all the mindshare we formerly committed to television. Clay Shirky talks about this in Cognitive Surplus: Creativity and Generosity in a Connected Age: maybe we really wanted, needed, to have two way conversations all along, and broadcast television was just an alternative we had to accept until we got the technology we have now.

Television has confused us, it makes us think that media is (are?_ a vehicle for commercial messages, and without ads and persistent selling, a medium is broken. (This makes me remmber Lance Rose’s contention more than a decade ago that THE INTERNET IS NOT A MEDIUM, it’s an environment, and that’s probably another conversation we should be having.)

I’ve tried to establish my social media cred, but in a world where social media, as a profession, is supposed to be about marketing and selling, I don’t completely fit. It’s not that I’m against selling, but it’s not really what my life’s about, and I’ve never been attracted to the world of sales and marketing, even less so when I found myself in the middle of it.

But I love the idea of building relationships – that businesses can build symmetrical relationships with their customers, and vice versa. Is that the new marketing? Time will tell. I was raving supporter of the ideas in The Cluetrain Manifesto: 10th Anniversary Edition, and I’ve been edging my way into a conversation started by one of its authors, Doc Searls, labeled Project VRM. Doc recently posted a piece called “Manage relationships, not each other,” that makes the point:

During the Industrial Age, the power asymmetry between vendor and customer got so steep that vendors got to talking about customers as if the latter were cattle or slaves. Customers became “targets” that vendors “captured,” “acquired,” “locked in” and “managed.” As the Information Age dawned, however, customers gradually became more independent. So, midway into the second decade of the new millennium, customers were no longer the ones being managed. Nor, however, were vendors. Instead, relationship itself was managed by both parties.

This perspective lines up pretty well with Maureen Johnson’s manifest. “I am not a target” is not unlike “I am not a brand.”

Every person I meet is a universe of experience and intelligence and spectacular complexity. I’m learning to appreciate this point, I can no longer easily and readily reduce someone to a statistic or a line of text or a bald concept bouncing around in my brain… there’s too much. We need more respect and reverence in our lives, and less of the reduction and dehumanization that we’ve somehow fallen into, no doubt driven by old media and mass marketing conceptual shorthand.

So this is where I have to quote, in full, the “I am not a brand” manifesto:

The Internet is made of people. People matter. This includes you. Stop trying to sell everything about yourself to everyone. Don’t just hammer away and repeat and talk at people -— talk TO people. It’s organic. Make stuff for the Internet that matters to you, even if it seems stupid. Do it because it’s good and feels important. Put up more cat pictures. Make more songs. Show your doodles. Give things away and take things that are free. Look at what other people are doing, not to compete, imitate, or compare . . . but because you enjoy looking at the things other people make. Don’t shove yourself into that tiny, airless box called a brand -— tiny, airless boxes are for trinkets and dead people.

Arianna Huffington – interviewed by Evan Smith

Wrote this in May and saved it as a draft. Timing’s good for publication: I’ve been thinking a lot about the Huffington Post as a model for network journalism that combines the work of professionals with contributions from a broader set of bloggers. In this interview, Huffington showed that she was savvy about the contemporary Internet and the future of journalism.

May 4, 2010 – As part of the Texas Monthly Talks series, Evan Smith interviewed Arianna Huffington, in town to speak at a benefit for the Texas Freedom Network. Huffington’s flight arrived late, so the talk was abbreviated. Much of the discussion was about the current state of journalism and Huffington Post’s (HuffPo’s) success as new media hybrid journalism – a combination of user-generated and professional content.

Huffington led with the observation that people want contgent, but they also want engagement – they want “to be part of the story of our time.” That’s the essence of participatory journalism. She said that self-experssion has become the new entertainment. Evan: “It all counts.”

Huffington Post has been successful, has a readership apporaching that of the New York Times, and leaving other major online publishing venues in the dust. She says part of the secret of HuffPo’s success is that “we’re not just talking to people who agree with us.”

HuffPo has a thriving community and “human moderators” that maintain the civility of the conversations – “we don’t want it to be the Glenn Beck Show.” When Rick Perry shot the coyote and it was reported at HuffPo, there was an immediate surge of interst – 1,000 comments within a day. In addition to moderators, the Post’s readers police the site – they wouldn’t be able to manage the conversations without help from the community.

Evan: “What happened to journalism?” Why is for-profit legacy journalism failing? Have they lost sight of their mission, or is it that new media approaches are more compelling. “Are they down, or are you up?”

Huffington responds that they just didn’t get it. When HuffPo launched, legacy media were still skeptical of new approaches (participatory media/social media), but now they’re moving online, moving toward a hybrid model. Pay walls haven’t worked – worked for Wall Street Journal initially, but their subscriptions are down. In this context, she mentioned that traditional tenets of journalism should prevail – meaning that fundamental journalistic ethics and standards will necessarily be maintained in new media. [I’ve been thinking about this, and want to be involved in training news bloggers and citizen journalists. Matt Glazer of Burnt Orange Report and I have been instigating a conference for this purpose.]

Digital natives consume all their news online. We can’t go back to old ways of doing journalism – can’t put the genie back in the bottle. The Internet has a culture of free content that can be monetized [she didn’t specify how, but I suspect she was thinking of advertising and some other mix of revenues associated with brand].

You have to be prepared to take your content to the readers, rather than expecting them to come to you. [This is a 101 new media concept, but always worth repeating.] Evan notes that this implies a “disintermediation of content from the source.” Arianna: “ubiquity is the new exclusivity.”

HuffPo includes content contributed by unpaid bloggers, paying only editors and reporters. Is Huffington building an empire on the backs of unpaid contributors? Not at all – bloggers are leveraging HuffPo’s visibility, finding and building audiences, getting book deals, etc.

HuffPo aggregates content from other sites, too – is this leveraging others’ content? Huffington notes that they strictly follow fair use guidelines and have never been sued for infringement. Aggregation and curation of content are essential parts of an Internet information service. Curation means identify what’s important and elevate it, give it visibility. Put flesh and blood on data.

Evan: “Obama – how is it going?” Huffington says she is very glad he was elected, that he inherited a huge crisis. One problem: he’s surrounded himself with Clintonites like Larry Summers, and did everything humanly possible to save Wall Street, but nothing to save Main Street. Huffington is writing a book on the decline of the middle class, and is very concerned that there is no effort to reverse the decline, which has been going on for thirty years. So Obama’s administration should be doing dramatic things to save the middle class – though he may have done a lot already, he’s not necessarily taking the right approach, making bold moves that he should be making to support those in the middle. Some say he saved the economy, but he didn’t – he just saved Wall Street. We still have 25 million people out of work, and escalating foreclosures.

It also bothers her that no strings were attached to the salvation of Wall Street.

Otherwise, Obama is an extaordinary communicator and has improved U.S. standing in the world community – those are real pluses. “I will definitely vote for him again. What’s the alternative?” The “loyal opposition” is not talking today’s issues seriously. They treat governing like it was a debating club.

The administration’s attempts to be bipartisan are wasted effort, she says. She compares it to guys hitting non Ellen Degeneres “and not being told you’re not going to get anywhere.”

Information spill?

We’ve all zeroed in on a set of established platforms for interaction, primarily Facebook and Twitter. Icons linking to Facebook and Twitter pages are standard on many web sites now – suggesting a consensus about where people are hanging out. Many experience the Internet through one or both of these platforms, and a few scattered others (.e.g YouTube, Yelp, blogs etc.). Increasingly we see world-views based on shared content and hyperlinks. As it becomes the new normal, social media is just media, no need to make the distinction. We can end the obsession with tools and forms on the production side, and focus on content. On the consumption or demand side, we have a problem of abundance, of having more quality content than we can track and manage. Filters are crucial, but imperfect. Maybe we still need some work here.

How do we characterize the flow of media? In this context, we invoke the words “push” and “pull.” John Hagel describes pull as ” creating platforms that help people to reach out, find and access appropriate resources when the need arises.” This morning I met with Evan Smith of The Texas Tribune, and he used the opposite word, talking about pushing media to readers where they are, rather than expecting them to come to you – “web site as destination” is obsolete in the world of social media.

I think they’re both correct. Is this a 21st Century media koan? I’d love to hear your thoughts.

Whatever the case, I don’t think we have a handle on the evolving flow of information online, any more than BP has a handle on the flow of oil from the MC252 spill (if you can call a explosive hemorrhage of oil a “spill”) in the Gulf of Mexico.

Blogchat and mutation

It’s hard to scale conversations beyond some manageable number of participants. Christopher Allen, in an excellent article on Dunbar’s number and other potential limits of social scale, argues that the optimimum limit is around 5-9 participants, possibly as many as 12.

In last night’s #blogchat on Twitter, I saw an example of attempted conversation beyond any reasonable scale, yet it did kind of work in that participants felt they were getting value from the conversation, and were excited and stimulated by the firehose of tweets and retweets.

I’m not sure “chat” is exactly the right word for this kind of conversational explosion where it’s difficult to track specific comments and ideas. In the Tweetchat application, a dozen or more comments would appear every few seconds. My experience was one of zeroing in a best I could, tracking only a fraction of the conversation. That’s the way Twitter generally works, anyway, as you scale up – you’ can’t hope to follow everything that’s said, so you dip in and out of the stream of expression. It’s nonlinear, chaotic; what I sometimes refer to as “drive-by conversation.” It feels very ADD. On the other hand, it’s stimulating, and I never fail to learn from these conversations, however disjointed they may seem.

I thought the experience would be more poweful as an asynchronous forum – that Twitter might not be the right tool for this kind of conversation. I posted so: “I wish we had this same group talking in an asynchronous forum to facilitate attention and focus.” Someone responded “That’s what the transcript is for – attention & focus.” So this is more like a blast of ideas, a group brainstorm, not quite a conversation, if you assume that conversation is sustained and coherent exchange of ideas, somewhat linear and trackable.

My concluding point is that we’re creating new ways of communicating that don’t necessarily acknowledge presumed limits of scale. We can say that meaningful conversation or teamwork has a limit of a dozen particpants, but we’re pushing that envelope hard. Same with Dunbar’s number, “a theoretical cognitive limit to the number of people with whom one can maintain stable social relationships,” presumably 150. The Wikipedia article for Dunbar’s numbers says”this limit is a direct function of relative neocortex size, and that this in turn limits group size … the limit imposed by neocortical processing capacity is simply on the number of individuals with whom a stable inter-personal relationship can be maintained.” Maybe we’ll see a neocortical mutation as we friend and follow many hundreds or thousands of people and attempt to manage ever larger numbers of “stable” relationships.

The Internet is not (just) a marketing platform

Increasingly I’m finding that, as a consultant about effective Internet communication, I have to talk about marketing, how to market to, for, and with communities and social networks.

Marketing is, always has been, an important part of the media mix, and it’s important to understand how the transformation and evolution of media – the emerging world of “social media” or “new media” or “digital media” – will change how we think about marketing and how it works.

To say what I want to say here, I have to devote a few paragraphs to my background. Over twenty years ago my life took a turn when I discovered a technology that connects people to people. Since then I’ve followed a career path that’s all about computer networks and social networks, and how the former mediates the latter to ever greater effect.

In the 1990s my focus was on cyberculture and Internet policy via the Electronic Frontier Foundation and related tribes, including EFF-Austin, and on Internet-mediated community + commerce and web publishing via FringeWare, Inc. and Whole Foods Market. At Whole Foods, I learned so much about building web sites that, when the dotcom bust ended the ecommmerce projects I was working on, I started a web development company, Polycot Consulting. Polycot was a cutting-edge, standards-based, open source web company, a partnership with two brilliant developers, Matt Sanders and Jeff Kramer. Part of my role in the company was based on what I’d always done, surf the edges of web trends and understand what technology patterns we should recommend and build for our clients. Because of my focus on community, I was particularly focused on the evolution of the social web. Because of my focus on publishing, I was particularly interested in the trend away from professional to personal content – the blog. Because I hung out at O’Reilly’s Emerging Technology conferences and SXSW Interactive here in Austin, and because I had so many connections within ‘net culture, I was spending time with many of the best and brightest thinkers about the direction of the web. I was in conversations about trends that came to be labeled “web 2.0,” and the evolution of social networks, social media, social web.

So I was drawn into the “social media” conversation when it started within the last 3-4 years. I had been building a consulting methodology focused on helping people understand and leverage their relevant social networks to accomplish their personal or organizational goals. As a consulting practice, it worked well. When we heard people talking about social media, we thought there might be a conceptual link to what we were doing. I started paying attention, and thought I would consult in that space – really a matter of effective communication in the new world of participatory, omnidirectional, Internet-based communication. It was the sort of consulting I was ideally suited to do.

I’m presenting all of this background to make it clear that I’m not just talking to hear my head rattle. The Internet, the web, and what we’ve come to call “social media” and “social business,” the social web, is my career and my life, what I live and breathe, something I feel passionate about. A digital culture has been emerging for two decades. It’s opened up a world where anyone can produce and publish content; it’s a powerful and disruptive context for human energy, intelligence, and innovation. On the Internet we can mash up our personal and professional lives and selves and effectively channel creative impulses we never knew we had.

My life online led me into a company called Plutopia Productions the name of which derives from “pluralist” + “utopias.” The Plutopia krew has evolved a vision of a DIY world where everyone can build to a unique, personal set of specs – configurable homes, configurable scenes, all mediated by pervasive technologies… the realization of the cyborganic vision many of us were talking about in the 90s.

So here’s the drum roll, and the point I’ve been working toward in this post:

The Internet is not a marketing platform.

Obviously marketing is a powerful part of the mix of many things we all do online. Increasingly I find myself consulting about effective marketing communications using social media, and I know how important that can be for some people. The Internet is also an effective platform for getting customer feedback into both product marketing and operations.

For some, there’s a temptation to want to structure the Internet as an environment for sales and marketing, where those activities can be as dominant as they became with television when it emerged as pervasive media in the fifties and sixties. Marketing was such an obvious use for the medium, which was saturated over time with commercial messages. Over decades in a world of persistent, pervasive commercials, audiences started shutting down, became marketing resistant.

As this was happening, the Internet emerged, lowered the barriers to media production, and now anyone can produce as well as consume media. We are empowered, and we feel that we don’t have to follow marketing messages at all – we ignore them, even suppress them. If Facebook decides to become less of a social engine and more of a marketing engine, someone else will build an open alternative that isn’t about selling, and Facebook might just be doomed to beocme the 21st Century AOL.

We do see an emerging Internet marketing discipline, an approach that can be summed up in a word: spam, which has come to be used as a term for any unsolicited commercial message delivered online.

However there’s another approach that is lighter and more consistent with digital culture. When I give talks about social media, which is often, my message is that you have to forget manipulative or interruptive marketing and selling and build authentic relationships with your customers/clients/constituents instead. That’s hard to do and it doesn’t scale very well. Traditional marketing people are often uncomfortable going there, and that’s not unreasonable – they have efficient processes geared to mass marketing and advertising, and those do scale, and they do seem to have an effect. But mass media’s fading if not evaporating, mindshare is fragmented, and in a social network/digital media context, mass marketing feels like, or is, spam.

I don’t have a marketing background, but as a new media expert, I believe that, if you’re in marketing, you have to rethink all your strategies and processes and get your head around a media environment that enables symmetrical relationships with customers. In this context, your customer is your partner, not your “target.” Read The Cluetrain Manifesto (which I’ve been advocating since it appeared in the 90s). Get familiar with Project VRM. Marketing strategies that empower the customer are the new black. (Those that don’t are the new black and blue.)

If you want a good model for new thinking, check out Tara Hunt’s work. She strikes me as particularly clueful about 21st century marketing, viewed from an online marketing professional’s perspective, but also from an online community builder’s perspective. You can also contact me if you need help in thinking about how your business can be more effective with new media.

UTeach

I spent today at the 2010 UTeach Conference here in Austin. UTeach is an acclaimed teacher prep program at the University of Texas. Attendees were mostly K-12 teachers and university professors from across the U.S. I heard about UTeach’s STEM focus (Science, Technology, Engineering, and Math), New Technology High Schools in Napa and Manor, project-based learning, Knowing and Learning in Math and Science, etc. I was primarily interested in the possibility of collaborative projects and learning involving multiple classrooms and disciplines, mediated by social technology. I was live tweeting the event. There were multiple sessions per time slot, so I only got a slice of it. (I also missed the events on Tuesday, and probably can’t make it tomorrow – so much more to learn about learning.)

“Managing relationships, not each other”

I’ve become a fan, adherent, and hopefully participant in Project VRM – Vendor Relationship Management – a practical extension of the Cluetrain Manifesto coordinated by Doc Searls as fellow at Harvard’s Berkman Center. I have a lot more to say about Project VRM in future posts – essentially it’s about establishing (restoring?) a symmetrical relationship between customers and vendors. Doc describes this in a post following last week’s Internet Identity Workshop as “managing relationships, not each other.” I wanted to post that link asap. Here’s the opening paragraph, which gives you an idea why this is important thinking:

During the Industrial Age, the power asymmetry between vendor and customer got so steep that vendors got to talking about customers as if the latter were cattle or slaves. Customers became “targets” that vendors “captured,” “acquired,” “locked in” and “managed.” As the Information Age dawned, however, customers gradually became more independent. So, midway into the second decade of the new millennium, customers were no longer the ones being managed. Nor, however, were vendors. Instead, relationship itself was managed by both parties.

This gets to my issue about broadcast media, which includes broadcast strategies deployed in “social media” contexts, which we see often enough to know that the cluetrain hasn’t quite left the station. Marketing culture doesn’t warm to symmetrical, interactive customer engagement – for many marketing professionals, a VRM approach feels inefficient and cedes too much control to the customer (though VRM is about finding technologies that make the interactions more efficient). I’m building my practice around facilitating relationships (businesses/customers, ngos/constituents – I’m especially interested in the latter, working with mission-driven organizations).

Out of time for now, but more to come.

David Armano’s social business manifesto

I just met Chris Carfi via Project VRM, and this week learned that he’s joining Edelman. David Armano, now with Edelman, blogged about this, and included his social business variation of the Carfi’s customer manifesto:

We will no longer view you as “consumers”. Instead, you are co-creators, participants, and advocates.
We will actively listen, and participate authentically because we know you demand nothing less.
We will meet you on your terms, not ours.
We will provide value, not noise.
We will evolve our workforce to meet the changing demands of a networked economy.
We will focus on your needs vs. our messages.
We will build relationships that connect us in ways where we all benefit.
We will act ethically and transparently, because it’s no longer a choice.
We will respond to changes quickly—we will adapt.
We will move forward with you, not without you, because you are our future.

Is this a transformation of the organization? Great customer-centered orgs always come from a similar attitude, but there’s a sense of urgency here – this is what you have to do, because you’re in a media environment that embraces transparency – you’re in the participatory panopticon – and is about symmetrical relationship. So this isn’t just good advice, it’s survival training for the networked world.

Cory Doctorow in Austin

Cory Doctorow was in Austin yesterday on a book tour for his new young adult novel, For the Win. Cory says he likes writing young adult fiction because it’s for people who use it, not just for entertainment, but to figure out the world. Cory introduced me to another science fiction writer, Steven Brust, now living in Austin. I love the information-dense, visionary, ironic and funny conversations science fiction geeks have, just casually over dinner or drinks. Cory’s not just a science fiction geek, though – he’s also an Internet maven and activist, especially focused on issues like copyfight and freedom to connect. Cory is former EFF online activist and board member of EFF-Austin, which threw an after party, called “Whuffiefest,” following his book signing. Produced by Plutopia Productions, the event had a large and enthusiastic turnout.

Unanswered questions about e-patients

Susannah Fox has posted two sets of questions about e-patients, sent by Liav Hertsman and his colleagues at Tel Aviv University, that call for further research.

First set:
1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

Second, followup set of questions:
1. Are there any specific studies related to online behavioral health resources that you might recommend?
2. Are there any specific studies directly related to the use of online health assessments?
3. Are there any specific studies that might support or refute the merits of utilizing online health resources for mental/behavioral health issues?

Note very useful comments below the post.

Abundance, the ‘net, and the open mind

I recently attended (and blogged and tweeted) Fiber Fete in Lafayette, Louisiana. One highlight of the Fete was David Weinberger’s talk, which closed out a day of presentations and panels about the evolution and implications of high-bandwidth networks. David had been asked to talk about “what we could do if we had ubiquitous, high speed, open, symmetric (i.e., roughly the same speed for uploading and downloading) connectivity.” As we sat together at lunch, he was telling me that he doesn’t really know how to answer that question.

What he did talk about was stimulating and, I think, important to consider: “an assumption of abundance…an abundance of information, links, people, etc.”

The abundance means we will fill up every space we can think of. We are creating plenums (plena?) of sociality, knowledge and ideas, and things (via online sensors). These plenums fill up our social, intellectual and creative spaces. The only thing I can compare them to in terms of what they allow is language itself.

What do they allow? Whatever we will invent. And the range of what we can invent within these plenums is enormous, at least so long as the Net isn’t for anything in particular. As soon as someone decides for us what the Net is “really” for, the range of what we can do with it becomes narrowed. That’s why we need the Net to stay open and undecided.

Read more at David’s site, “JOHO the Blog!” Ignore Richard Bennett’s comments. Think about what David is saying, and feel free to comment here, because I’d love to discuss it.

Good medicine

Just three years ago, my friend Dave deBronkart’s life changed with a routine x-ray that showed a troubling shadow on his lung, which turned out to be the result of a metastaszied stage IV, grade 4 renal cell carcinoma. Prognosis for long-term survival was dismal, statistically: median projected survival time was 24 months.

Dave, an online maven and communicator who consumes and shares information and builds his knowledge base with real intensity, immediately looked online for information about his disease. He joined the Association of Cancer Online Resources (ACOR), and started an online journal at CaringBridge.

I met Dave through colleagues in the e-Patients Working Group that the late Dr. Tom Ferguson formed, a group that became founders of the Society for Participatory Medicine. Participatory medicine emphasizes the active role of the patient in the process of medical treatment. This is more possible because of the Internet and the emerging, evolving abundance of information and information channels. Before, a patient’s exposure to healthcare knowledge was mostly at physician or hospital touchpoints that were inherently limited in duration. There was no great way for patients to study their conditions and find others with the same or similar conditions, getting similar treatments. If you did find and meet one or two others with the same condition, there usually wasn’t a facility for comparing notes and data. With the Internet, that’s all changed. (Tom Ferguson saw this coming in the early 90s, which is when he and I met and started talking).

I could write much more about participatory medicine and the concept of the e-patient, but I wanted to say more about Dave. Wendy White at Sirensong posts about a recent study of empowered patients. A key finding: “Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance.”

The study found that empowered patients have: “a high need for cognition, which means that they’re not happy with simply knowing a particular prescription successfully treats their condition, they want to know why it works. These people want to understand not only their condition but their treatment options.”

This definitely sounds like ePatient Dave, and reading it made me think of another Dave characteristic: When he found out he had stage IV cancer, Dave didn’t let it define him. He didn’t become a person who was dying, any more than anyone else. He was still Dave, confronted by a challenge, and intent on finding his way through it.

I remarked a couple of days ago that a disease seems to become terminal when it’s discovered. I might have meant that contact with the healthcare system and its treatments can kill you faster than some disease, and I think I’ve seen that before, with my father, who had colon cancer and would have could have lived well and longer had he not agreed to surgery. (That’s 20-20 hindsight, but it’s accurate.)

But I also suspect that we can think ourselves to death. I’ve come to believe that our internal conversations set a path, drag or nudge us in a particular direction. If you want to live longer, it’s probably best not to spend too much time thinking you’re dying (though we all are, of course, at least evidence suggests that’s the case.)

I’m pondering all this as I plan what I’m going to say when I speak to a patient advocacy group a week or so from now. I’m talking about patients and social media, how our web conversations and access to information are transforming medicine, changing what it means to be a patient. I think we’ll see more patients like Dave deBronkart, jumping into their treatment with both feet, learning everything they can about their conditions, finding or building communities of support and hope. This is the real “healthcare reform,” I think.

Arianna Huffington – interviewed by Evan Smith

It also bothers her that no strings were attached to the salvation of Wall Street.

The administration’s attempts to be bipartisan are wasted effort, she says. She compares it to guys hitting non Ellen Degeneres “and not being told you’re not going to get anywhere.”