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.

Science, lies, evidence, knowledge

In so many fields, owing to the Internet-driven democratization of knowledge, we learn that that the power associated with hoarded knowledge has been abused, and the position of leadership – the priesthood – associated with the acquisition of knowledge has been leveraged to manipulate and deceive. “Everything you know is wrong!”

David Freedman has a great article in the Atlantic about medical deception, called “Lies, Damned Lies, and Medical Science,” which focuses on Dr. John Ioanniddis’ dedication to exposing bad science in medicine.

He’s what’s known as a meta-researcher, and he’s become one of the world’s foremost experts on the credibility of medical research. He and his team have shown, again and again, and in many different ways, that much of what biomedical researchers conclude in published studies—conclusions that doctors keep in mind when they prescribe antibiotics or blood-pressure medication, or when they advise us to consume more fiber or less meat, or when they recommend surgery for heart disease or back pain—is misleading, exaggerated, and often flat-out wrong. He charges that as much as 90 percent of the published medical information that doctors rely on is flawed. His work has been widely accepted by the medical community; it has been published in the field’s top journals, where it is heavily cited; and he is a big draw at conferences. Given this exposure, and the fact that his work broadly targets everyone else’s work in medicine, as well as everything that physicians do and all the health advice we get, Ioannidis may be one of the most influential scientists alive. Yet for all his influence, he worries that the field of medical research is so pervasively flawed, and so riddled with conflicts of interest, that it might be chronically resistant to change—or even to publicly admitting that there’s a problem.

At e-Patients.net, Peter Frishauf writes a response to the Atlantic article, called “Fixing those Damn Lies.” How do we fix them? The Atlantic piece discusses Ioannidis’ suggestions to change the culture of medical research, and reset expectations. It’s okay to be wrong in science – in fact, it’s almost a requirement. The scientific method is about testing and proving hypotheses – proving can be “proving wrong” as well as “proving right.” Either way, you’re learning, and extending science.

Frishauf also mentions how medicine and science should embrace the Internet “and figure out a way to better incorporate patient self-reported and retrospective data in trials,” which is one goal of participatory medicine. He also suggests “giving up on tenure-tied-to-the-peer-reviewed-literature, and embracing a moderated form of pre and post-publication peer review,” something that came up in discussion when I spoke at the Central Texas World Future Society Tuesday evening. (More about this in an earlier e-Patients.net post by Frishauf.)

Knowledge is not a citadel or ivory tower, but a network that we could all be working, challenging, and improving.

Central Texas World Future Society: Future of the Internet

Here’s a presentation I delivered to the Central Texas World Future Society, used as a framework for a discussion of scenarios for the network and for the application layer.

The Social Network

The David Fincher/Aaron Sorkin film collaboration called “The Social Network” is not about technology, though there are scenes that suggest how code is produced through focused work (which actually looks boring when you’re watching it “IRL” (in real life), without Fincher’s hyperactive perspective – but is so engaging you can lose yourself totally in the process when you’re the one actually producing the code).  The film is more about the entrepreneurial spirit, what it takes to have a vision and see it through. The real visionary in the film, Mark Zuckerberg, appears far less intense IRL than Jesse Eisenberg’s interpretation would suggest, but his drive and work ethic are undeniable. It’s not an accident that a guy in his twenties produced a billion-dollar platform; he could have been derailed if he’d lacked the persistence of vision and intent that the film shows so clearly. And, of course, he was kind of a jerk, probably without meaning to be. That kind of focus and drive tends to override comfortable social graces, kind of ironic when you’re building a social platform.

Larry Lessig complains that Sorkin’s ignorance of Internet technology caused him to miss the real story here, that Facebook exists because the Internet is free and open and presents few barriers to innovation. But I don’t think Sorkin wanted to write that story – he found drama in the Zuckerberg vs world conflict and wrote the story he had to write, acknowledging that he made no attempt to be true-to-fact.  He does pick up on the IP issue, and the fact that Zuckerberg shouldn’t have been forced to pay the Winkelvoss twins (there’s a line in the film where Zuckerberg says a guy who builds a better chair shouldn’t have to share his profits with anybody else who’s thought about building a chair before he got to it). In the film, he’s clearly having to pay because his grating personality and arrogance make him unattractive, not on the merit of the facts of the case. Eduardo Saverin seems in the film to have been screwed over, though one could argue that dilution of his shares was justifiable owing to a lack of commitment to the enterprise. More here.

After seeing the film, and reading and thinking some more about the creation and evolution of Facebook, I find that I have more respect for Zuckerberg’s genius and his drive… but like many I’m concerned about his apparent lack of social and ethical depth, especially since Facebook is how so many people today experience the Internet. Working on a talk about the future of the Internet, I’m finding that one plausible scenario is that Facebook replaces the web as a kind of operating system/interface. What are the implications?

Events this week – NPOCamp and Austin News Hackathon

Cross-posted from http://effaustin.org.

Two great events coming up this weekend in Austin, sponsored by EFF-Austin.

Friday, join us at NPO Camp – a Barcamp for Nonprofits and Techs. We had one of these several months ago, and it was a real blast! The idea here is to bring the nonprofit and technology communities together for a day and talk about the technical challenges the NPOs face, while educating the techs about that world. Last event, we had 200+ attendees forming into sessions and pods; all were lively.  Greg Foster, our newest EFF-Austin board member, has done most of the legwork in organizing the event, with major production assistance from Maggie Duval, also a board member and producer of the annual Plutopia event during SXSW. Sign up here.

Saturday, coders and journalists come together to build innovative news applications at the Austin News Hackathon, cosponsored by EFF-Austin and the local Hacks Hackers chapter led by Cindy Royal.  The day will begin with a presentation by Matt Stiles and Niran Babalola of the Texas Tribune, talking about some of the news apps they’ve been developing. Then teams will form to match ideas from journalists with technical expertise from the coders who are attending. These kinds of events are the future of journalism!  This event also benefited from Maggie Duval’s production assistance. Sign up here.

Both events will be catered by Pick Up Stix of South Austin.

Self-Diagnosis and Participatory Medicine

The Journal of Participatory Medicine has published an interesting piece on Self Diagnosis, subtitled A Discursive Systematic Review of the Medical Literature. It’s a complex subject – as patients become more informed and empowered, they are more liable to want to have a role in diagnosis, and more apt to question a doctor’s perception or framing of their condition. This isn’t new for some of us – thirty years ago I was disagreeing with my physician to the extent that he would prescribe to treatments, one based on his assessment and one based on mine.

The systematic review published in the JOPM turned up 51 articles, of which 38 were suitable for inclusion in the review. There are three assessments of self-diagnosis: that it’s reliable and desirable (31%), that it’s not reliable but still desirable (23%), or that it’s neither reliable nor desirable (29%).

I’m sure the assessments depend to some extent on context and personality, which varied in the papers assesed. One significant problem considered in the discussion is that “self-diagnosis obviously challenges the authority of medicine, an authority which may already be in decline.”

A decline in medical authority is not necessarily a bad thing, even from medicine’s perspective. The notion of self-care and the changing nature of the doctor-patient relationship have been lauded as positive changes in the health system.

The article goes on to discuss how the patient/doctor relationship was historically “characterized by an authoritative, paternalistic doctor managing the care of the submissive patient.”

With respect to patient self-diagnosis, the modern patient clearly would participate in diagnostic decision making, but not necessarily with ease. The ability to assess quality and reliability of health information is not necessarily within the grasp of most lay people, presenting a difficulty on two fronts. On the one hand, any attempt to mediate access to information, or to recapture control of its delivery will infringe upon lay autonomy, returning the patient to the paternalistic care of the omniscient physician. On the other, consuming information without adequate understanding results in individual vulnerability for both patient health and the doctor-patient relationship.

I think this gets to the challenge we face in advocating participatory medicine, but the same challenge is inherent in any democratization of knowledge: to participate, you have to be able to make informed decisions – you have to be informed, and you have to be capable of understanding the information that’s accessible to you. The real source of empowerment may be, not just in the education and participation of the patient, but in the mutually empowering relationship of physician and patient.

The article concludes “that there are no clear binaries to guide the incorporation of self-diagnosis into contemporary health management.”

It is a complex matter, because it is a relational one, tightly bound up in the ways lay people and doctors position themselves and interact relative to one another and relative to particular disease categories.

Knight News Challenge

The Knight News Challenge will launch October 25, just days after our Austin News Hackathon.

According the the press release, the challenge “for the first time will feature experimental categories: Mobile, Authenticity, Sustainability and Community.” Knight adopted these categories “to harness and accelerate the entrepreneurial energy we are seeing in the field.”

Where ideas come from

Wired News hosts a conversation between Kevin Kelly and Steven Johnson, who’ve written similar books… Steven – Where Good Ideas Come From: The Natural History of Innovation; and Kevin – What Technology Wants.

Steven “finds that great creative milieus, whether MIT or Los Alamos, New York City or the World Wide Web, are like coral reefs—teeming, diverse colonies of creators who interact with and influence one another.”

Kevin “believes “technology can be seen as a sort of autonomous life-form, with intrinsic goals toward which it gropes over the course of its long development. Those goals, he says, are much like the tendencies of biological life, which over time diversifies, specializes, and (eventually) becomes more sentient…”

I’m glad Kevin and Steven are making the “hive mind” point, a rationale for softening rigid proprietary systems and encouraging collaboration and interaction… sez Steven: “innovation doesn’t come just from giving people incentives; it comes from creating environments where their ideas can connect.” Great ideas emerge from scenes, the solitary inventors are just catalysts for the execution (no mean feat, though).

Weed it and reap!

All government is local 2.0: manor.govfresh

Manor, a small town in Texas a few miles from Austin, has become an unlikely star player in the new world of “Government 2.0.” This week Manor and GovFresh, an organization that provides news and information about technology innovation in government, joined forces to host a conference on “big ideas for local America.” The conference highlighted the work Manor, nearby DeLeon, and other small governments in the U.S. are doing to incorporate social media and open data approaches to provide better information and services to citizens, and to engage them more effectively. This is part of an open government trend that’s been brewing since the 1990s, but is catching fire with pervasive Internet adoption and digital convergence.

When Obama was President-Elect, Gary Chapman at the LBJ School in Austin spoke to a local community media summit and told how the Obama Transition Team had been working with the LBJ School on government transparency, with Open Government as the new administrations highest priority. Beth Noveck, Assistant to the White House CTO, was in Manor affirming that priority – the Obama Administration is providing leadership from the top.

In the last 5 years or so, as we’ve seen an acceleration of digital convergence and increasingly pervasive use of smart digital devices to access all sorts of information, we’ve seen a disruptive democratization of knowledge and information and demand for all sorts of data to be opened up via application programming interfaces. The world’s information is increasingly sorted, sifted, and combined in various useful and creative ways. This is transforming the worlds of journalism, healthcare, energy, and law as well as politics and government. The Manor gathering was an acknowledgement and update. Janet Gilmore of the Texas Department of Information Resources noted that there’s an open data movement within governments – and governments have all sorts of data sets they can expose – about weather, wildlife, real estate, income flows, resource locations, etc.

There’s also a huge potential for government at all levels to use social media to engage citizens – not just to get the word out about what government is doing, but listening to citizen input on what government should be doing. The message I heard in Manor is that people don’t want to talk about doing cool and innovative stuff with emerging technologies, they want to stop talking and start doing. And there’s so many easy ways to start doing: WordPress sites, 311 systems, Facebook and Twitter presences, QR codes, mobile applications… a list as long as crowdsourced minds can make it. Manor is soliciting ideas and conceiving new ways to incorporate technologies via its Labs, in partnership with Stanford Univeresity’s Peace Dot Program and others.

There are many challenges to opening up government, not the least of which is culture. Someone at the Manor gathering commented that “the technology is easy, but the people are hard.” That speaks to all sorts of challenges – training and adoption, privacy issues, culture change, apathy, control. But we’re on kind of a roll here, and picking up momentum and energy.

On January 28th and 29th, there will be a Texas Government 2.0 Barcamp at the Eastview Campus of Austin Community College. Watch this space for more information.

Free Hoder: facing death for the crime of thinking and speaking

Hossein Derakhshan, aka Hoder, is evidently facing the death penalty in Iran – for blogging (or, in their words, “collaborating with enemy states, creating propaganda against the
Islamic regime, insulting religious sanctity, and creating propaganda
for anti-revolutionary groups.”) This is nuts, and we should all be blogging in support of Hoder’s release. More information at Global Voices.

One continuous mistake: single-minded effort

This came in via Tricycle Magazine’s “Daily Dharma” today:

Several years ago, a sociologist studied students in a neurosurgery program to see what qualities separated those who succeeded from those who failed. He found ultimately that two questions in his interviews pointed to the crucial difference. He would ask the students, “Do you ever make mistakes? If so, what is the worst mistake you’ve ever made?” Those who failed the program would inevitably answer that they rarely made mistakes or else would blame their mistakes on factors beyond their control. Those who succeeded in the program not only admitted to many mistakes but also volunteered information on what they would do not to repeat those mistakes in the future.

Shunryu Suzuki-Roshi has a relevant comment in Zen Mind, Beginner’s Mind:

When we reflect on what are doing in our everyday life, we are always ashamed of ourselves. One of my students wrote to me saying, “You sent me a calendar, and I am trying to follow the good mottoes which appear on each
page. But the year has hardly begun, and already I have failed!” Dogen-zenji said,’ ‘Shoshaku jushaku.” Shaku generally means “mistake” or “wrong.” Shoshaku jushaku means “to succeed wrong with wrong,” or one continuous mistake. According to Dogen, one continuous mistake can also be Zen. A Zen master’s life could be said to be so many years of shoshaku jushaku. This means so many years of one single-minded effort.

Admitting your mistakes is being real. Only by living with and learning from your mistakes can you advance your thinking. How can this play out in daily life? I’ve found that meetings I’m in are more productive if I’m willing to contribute thoughts that might be wrong. By offering unfiltered ideas that might be “mistakes,” I have often advanced the discussion toward productive decisions and solutions.

A mistake can be seen, then, as productive exploration.

Self organizing solar panels

“Scientists at MIT have discovered molecules that spontaneously assemble themselves into a pattern that can turn light into electricity — essentially a self-creating solar panel. In a petri dish.” [Link]

I was wondering if this discovery has a practical application. A commenter has the same question, someone else answers:

The implication of the addition of an ‘additive’ to disassemble into a liquid ‘soup’ is that the stuff can be sprayed/painted onto a surface. It also means that it can be mixed with polymers and woven into materials etc.

Paint or spray your house/car/boat/aircraft with it, and decide you want a different colour? No problem, spray the additive/solvent and it comes off.

(Thanks to Audrey Thompson for the pointer.)

Journal of Participatory Medicine – new version

As a cofounder of the Society of Participatory Medicine, I’m psyched to see new work appearing in our journal. Here’s a press release with more info:

The Journal of Participatory Medicine (JoPM), the online peer-reviewed, open access publication of the Society for Participatory Medicine, has released new content for its 2010 volume. The journal’s mission is to transform the culture of medicine from a delivery system driven by clinicians to a shared enterprise, by publishing content that demonstrates whether and how patient participation helps to achieve better health outcomes. JoPM presents articles and multimedia content by both health care professionals and consumers, in keeping with participatory medicine’s cooperative health care model that encourages, supports and expects active involvement by all parties.

Building on the foundation laid by the inaugural volume, which explored participatory medicine’s parameters and challenges, the new volume examines the merits of specific approaches and tools of participatory medicine. Topics include shared decision making in a clinical setting, patient participation in medical evidence gathering, the pros and cons of consumer health information technology, and more. One of the Co Editors in Chief, Charlie Smith, noted: “Starting a new journal in a field that is still evolving requires patience and persistence. From last year’s beginning, I envision the JOPM will continue to gain momentum, becoming an authoritative source of information for both professionals and the public about how Participatory Medicine contritbutes to optimal health care outcomes.”

JoPM publishes continuously, posting content as soon as it is ready for publication, and is available free of charge. The editors are still accepting submissions for the current volume. Prospective authors may view the journal’s submission guidelines at www.jopm.org/submissions.

Get out the level-headed vote

“… for voters of all stripes, Tuesday’s primaries should illuminate the growling face of a new fringe in American politics — and provide the incentive for level-headed voters to become enthusiastic about the midterm election.” [Link]

We always said that the Internet would bring more voices into the political conversation, that we would be “more democratic,” as though that was a good thing. But what if it’s not? What if more voices means more noise? What if it means more opportunities to give volume to lizard-brain thinking, and appeal to emotional rather than practical/intellectual levels of thinking?

Hopefully in November we’ll be voting from the cerebrum, making rational rather than emotional choices… turn out the “level-headed voters” mentioned above.

Link Coworking

Last Thursday, the day after Austin was swept by a tropical Texas frog-strangler, I met with Liz Elam and toured her new coworking facility, called Link Coworking. It’s on Anderson Lane, across the street from old Northcross Mall and near the Village Cinema ( 2700 W. Anderson Lane, Ste. 205 ). Liz’s facility will have access to an outside deck for parties, like the October 15 Grand Opening (6pm-9pm). 

Coworking is the wave of the present, and I expect and hope to see many more coworking facilities opening in Austin. (I spent a lot of time at Conjunctured on East 7th, but if you add the capacities of Conjunctured, Link, Texas Coworking, Tech Ranch, and any others that might be brewing or launching, you’re still just scratching the need for informal, low-cost business spaces. (Liz noted that her space would be less tech-focused than Conjunctured).

The rains last week revealed one interesting feature of Liz’s new facility: the roof leaked like a sieve. The place was drying out with multiple fans and the roof was under repair when I visited.