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Participatory medicine with Jon Lebkowsky – Technoccult interview

Jon Lebkowsky

Jon Lebkowsky is a social media consultant and cofounder of the Society for Participatory Medicine. He was also the co-founder of FringeWare, Inc. and EFF-Austin, co-edited Extreme Democracy, and is a regular contributor to WorldChanging. You can read his blog here and follow him on Twitter here.

Klint Finley: Let’s start off by defining what “participatory medicine” is.

Jon Lebkowsky: There’s a good definition on Wikipedia:

Participatory Medicine is a model of medical care in which the active role of the patient is emphasized.” It can be patients coming together in communities dedicated to a specific disease or condition, or it can be patients being considered peers within treatment teams that are treating their conditions.

The Internet makes it more possible, in that patients can find much more information about their conditions online, and they can find each other.

You’ve been involved with online communities for many years, how did you get involved with participator medicine?

Through my relationship with Tom Ferguson. Tom was a participatory medicine pioneer. He had edited the health section of the Whole Earth Catalogs, and published a magazine called Medical Self Care. We started talking and hanging out in the early 90s – he found me via EFF-Austin. He could see the potential for the Internet to provide patients access to more and more information, and he had always advocated for patients to be as informed as possible, and to have a role in treatment… and do as much for themselves as possible.

He had a grant from the Robert Wood Johnson Foundation to do a white paper on e-patients (See e-patients.net), and he knew that blogs and social technology would be relevant. He wanted me to join his team of physicians and others because I was involved in the evolution of social technology, what some now call social media.

I started working with the e-patients working group and became a founding member of the Society of Participatory Medicine.

How long this movement had been afoot? I’ve read that things like this were going on as far back as the 80s in places like the WELL.

Yes, there’ve been a lot of patient conversations and communities over the years in various contexts. The WELL has always had an active health conference, and patient communities like ACOR have been around for a while.

Other than there being a lot more people involved now that the Internet has become mainstream, is there any big difference between what’s going on now and what was going on way back when?

In a way, yes. With higher adoption of the Internet, you have so many more patients getting active online. And the tools are evolving so that it’s easier to create contexts for conversation. Also, partly thru Tom’s work and the Society, and other orgs like PatientsLikeMe and the Health 2.0 conference, you have a lot more interest, activity, and potential for innovation. And there’s more information coming online, so patients can theoretically be better informed. There’s also new tools for people to manage their health records online, and track aspects of their health. More hospitals and healthcare professionals are starting to use social media to connect with patients and for community engagement.
We have a whole movement forming around patient demands for access to their complete health records.

Can you give any examples of “success stories” in participatory medicine – anything that really stands out? Like a situation where you could say “Wow, that recovery could never have happened otherwise.”

Dave deBronkart. He had 4th stage terminal cancer, is now in remission. If he hadn’t been an e-patient, he might never have found the treatment that made him so much better.

Here’s what the Wikipedia article about him says:

His kidney was removed laparoscopically and he was treated in a clinical trial of high-dose interleukin-2 (HDIL-2), ending 7/23/07, which was effective in reducing the cancer, although his femur ultimately broke from damage caused by the disease. Visible lesions on follow-up CT scans continued to shrink for a year and have been stable since, and are presumed dead.

He learned of the treatment through his e-patient activiites and research. No one had told him about it. If a healthcare provider can’t offer a treatment, they don’t necessarily know about it or tell you about it.

ePatient Dave
Dave deBronkart aka E-patient Dave/em>

Is there a downside? Increased “cyberchondria,” or decreased trust in physicians?

Jon L. Part of the power of participatory medicine is in patients collaboratively researching and discussing various treatments. More powerful than a single source of information. There’s a potential down side – a physician has a different context for assessing information, and may make different judgements. But it’s good for patients to be more informed. For the physician, there can be an issue of having to spend more time with patients explaining why something they’ve found online might be inaccurate or inapplicable.

Physicians who believe patients should be empowered can be pretty good about that, though.

And there are physicians who don’t assume they necessarily have the answers, and are very willing to listen to patients who’ve been researching, and consider what they have to say.

The patient has a strong vested interest in outcomes, and will sometimes dig more deeply and thoroughly than the healthcare professional has time to do.

Here’s another downside to consider: some patients may become more knowledgeable about their conditions than their doctors. There’s a tendency for people, and I’m as guilty of it as anyone, to sort of double-down on their position if their expertise is questioned- especially if that expertise is questioned by an amateur. A physician might not want to admit they were wrong about something and their patient, who might not have ever even been to college, was right.

Yes, that’s definitely a concern. The solution is to create a culture where patients can be seen as peers. (Though not all patients will want that… many will.)

Not to be too personal, but have you been an e-patient yourself?

Jon L. Yes, but not with anything life-threatening, at least no so far. I have psoriasis and have researched it online, and was on a psoriasis email list for a while. I left it. My general sense was that the list was dominated by people who had strong feelings about what would or wouldn’t work – e.g. would vehemently oppose other patients who felt there was a potential to see results through changes in nutrition. I had a feeling they were being defensive – didn’t want to change their eating habits. So not all communities will be functional, or will work for all members.

I also had a problem with arrhythmia that seems to have been treated effectively by cardioversion and a round of drugs. I researched the drugs and decided I felt they were too toxic to continue, so I stopped after a year and a half. The cardio would have preferred I continued at least another six months.

Do you have any recommendations for potential e-patients for finding resources and communities, or places to avoid?

I would counsel proceeding with caution until you’ve felt your way into it, and got a good sense of the online landscape for your condition. It’s so easy to be misled, to get the wrong info. There are some communities that are well-established, and are the best places to go for specific conditions – like ACOR for cancer.

Also in researching your condition, remember that you’re not a physician or health researcher, so you don’t have the same context for assessing the information you find. Don’t assume your physician is wrong if you find contradictory information online.

You can get a sense of the landscape by reading e-patients.net and Journal of Participatory Medicine (the latter is the journal that the Society for Participatory Medicine started). There are also a lot of bloggers and tweeters in the e-patient space. Here’s a blogger on patient advocacy: Every Patient’s Advocate

Ed Bennett has resources for healthcare professionals.

Is there anything of note in the recent health care overhaul regarding participatory medicine?

It’s more of an insurance overhaul than a healthcare overhaul. I don’t think it has a lot of impact on what we’re talking about.

One thing specifically mentioned on the Society for Participatory Medicine’s web site is a need to address the digital divide’s impact on participatory medicine. Do you know of anything being done, or do have any ideas for solutions?

I don’t think there’s a specific project to address digital divide in this context. In fact, the community network / digital divide efforts in general seem to lack steam. Part of that is because Internet adoption is so high, it seemed that the issue was resolving as we had more and more ways for people to get online, and more incentives for them to do so. However I know there’s a significant number of adults who don’t have the kind of access they should, especially considering that so infrastructure for services is moving online.

State and smaller governments, for instance, are moving services online for the efficiency.

It’s not just a matter of access either, there’s also a matter of online literacy.

And when we get to the point where all healthcare data for everyone is available digitally, not just as an electronic health record but as a personal health record, only those who have the right degree of digital literacy will be able to have that as a factor in managing their health. To me the digital divide is more about knowing how to use computers than actually owning the hardware, so I’m with you 100%.

augmented reality medical app
Metaverse One’s augmented reality anatomy education app

Bruce Sterling, in the State of the World conversation you moderated, suggested the possibility that individuals, informed by various web based instructional materials, could start doing amateur medical operations. It was clear that what he was talking about wasn’t what you were talking about in terms of participatory medicine at the time, but have you thought anymore about that scenario?

I think it’s pretty unlikely – he was seeing that as the ad absurdum where participatory medicine could go, but I think that’s a real misunderstanding (and I don’t think he seriously believed it would go there). That’s really not what “participatory medicine” and “empowered patient” is about… when we talk about being better informed and being part of the conversation about your own health, it doesn’t follow that anyone would necessarily want to be an amateur surgeon.

Maybe not in the global North, but I can imagine it happening elsewhere, where access to professional health care is worse. Or even here in the States if economic conditions worsen.

You have a point there, but it’s not really what participatory medicine is about.

I could imagine someone learning how to do just one or two particular procedures really well and just doing doing those.

We are near a point where only the elite can afford adequate care. Yes, very possible.

Right, so the “participatory” in participatory medicine means more participating in the decisions, not doing surgeries.

Right… participating in the knowledge, and in the decisions.

Well, I think that about wraps it up. Do you have any closing thoughts?

My focus has always been on the Internet and its impact on culture, so participatory medicine is just one of a set of related interests. I’m still thinking about what’s really happening and how what’s happening in various sectors relate – participatory medicine to the changes in journalism and in politics, for instance.

Scientists discover missing link in the emergence of life

inorganic life

Philosophers and scientists have argued about the origins of life from inorganic matter ever since Empedocles (430 B.C.) argued that every thing in the universe is made up of a combination of four eternal ‘elements’ or ‘roots of all’: earth, water, air, and fire, and that all change is explained by the arrangement and rearrangement of these four elements. Now, scientists have discovered that simple peptides can organize into bi-layer membranes. The finding suggests a “missing link” between the pre-biotic Earth’s chemical inventory and the organizational scaffolding essential to life.

Daily Galaxy: Scientists Discover Missing Link Between Organic and Inorganic Life

(Thanks Wade)

Calculus created in India 250 years before Newton

infinite series

Researchers in England may have finally settled the centuries-old debate over who gets credit for the creation of calculus.

For years, English scientist Isaac Newton and German philosopher Gottfried Leibniz both claimed credit for inventing the mathematical system sometime around the end of the seventeenth century.

Now, a team from the universities of Manchester and Exeter says it knows where the true credit lies — and it’s with someone else completely.

The “Kerala school,” a little-known group of scholars and mathematicians in fourteenth century India, identified the “infinite series” — one of the basic components of calculus — around 1350.

CBC: Calculus created in India 250 years before Newton

(via Fadereu)

The trouble with trusting complex science

The Intellectual and the People

This column by Monbiot on the problems with public perception of science is excellent and worth reading in its entirety, but I found this particularly interesting as it confirms something I’ve suspected about ideology and belief:

In 2008 the Washington Post summarised recent psychological research on misinformation. This shows that in some cases debunking a false story can increase the number of people who believe it. In one study, 34% of conservatives who were told about the Bush government’s claims that Iraq had weapons of mass destruction were inclined to believe them. But among those who were shown that the government’s claims were later comprehensively refuted by the Duelfer report, 64% ended up believing that Iraq had weapons of mass destruction.

There’s a possible explanation in an article published by Nature in January. It shows that people tend to “take their cue about what they should feel, and hence believe, from the cheers and boos of the home crowd”. Those who see themselves as individualists and those who respect authority, for instance, “tend to dismiss evidence of environmental risks, because the widespread acceptance of such evidence would lead to restrictions on commerce and industry, activities they admire”. Those with more egalitarian values are “more inclined to believe that such activities pose unacceptable risks and should be restricted”.

These divisions, researchers have found, are better at explaining different responses to information than any other factor. Our ideological filters encourage us to interpret new evidence in ways that reinforce our beliefs. “As a result, groups with opposing values often become more polarised, not less, when exposed to scientifically sound information.” The conservatives in the Iraq experiment might have reacted against something they associated with the Duelfer report, rather than the information it contained.

Guardian: The trouble with trusting complex science

See also:

systematic ideology

Sanal Edamaruku’s quest to bring reason to India

Pandit Surender Sharma attempts to kill Sanal Edamaruku

Rationalising India has never been easy. Given the country’s vast population, its pervasive poverty and its dizzying array of ethnic groups, languages and religions, many deem it impossible.

Nevertheless, Mr Edamaruku has dedicated his life to exposing the charlatans — from levitating village fakirs to televangelist yoga masters — who he says are obstructing an Indian Enlightenment. He has had a busy month, with one guru arrested over prostitution, another caught in a sex-tape scandal, a third kidnapping a female follower and a fourth allegedly causing a stampede that killed 63 people. […]

His organisation traces its origins to the 1930s when the “Thinker’s Library” series of books, published by Britain’s Rationalist Press Association, were first imported to India. They included works by Aldous Huxley, Charles Darwin and H.G. Wells; among the early subscribers was Jawaharlal Nehru, India’s first Prime Minister.

The Indian Rationalist Association was founded officially in Madras in 1949 with the encouragement of the British philosopher Bertrand Russell, who sent a long letter of congratulations. For the next three decades it had no more than 300 members and focused on publishing pamphlets and debating within the country’s intellectual elite. […]

Exposing such tricks can be risky. A guru called Balti (Bucket) Baba once smashed a burning hot clay pot in Mr Edamaruku’s face after he revealed that the holy man was using a heat resistant pad to pick it up.

Times: Sceptic challenges guru to kill him live on TV

Previously:

Atheism = 1, Magick = 0

Brain Naturally Follows Scientific Method

Brain naturally follows scientific method

It turns out that there is a striking similarity between how the human brain determines what is going on in the outside world and the job of scientists. Good science involves formulating a hypothesis and testing whether this hypothesis is compatible with the scientist’s observations. Researchers in the Max Planck Institute for Brain Research in Frankfurt together with the University of Glasgow have shown that this is what the brain does as well. A study shows that it takes less effort for the brain to register predictable as compared to unpredictable images.

Alink and colleagues based this conclusion on the characteristics of responses in the primary visual cortex. It is known that the primary visual cortex is critical for vision and that responses in this brain area create a map of what we are currently looking at. Alink and colleagues, however, for the first time show that images induce smaller responses in this area when they are predictable. The implication of this finding is that the brain does not just sit and wait for visual signals to arrive. Instead, it actively tries to predict these signals and when it is right it is rewarded by being able to respond more efficiently. If it is wrong, massive responses are required to find out why it is wrong and to come up with better predictions.

The Philosophy of Punk Rock Mathematics – Technoccult interviews Tom Henderson

Tom Henderson - Mathpunk

Tom Henderson, aka Mathpunk on Twitter, is a mathematics lecturer at Portland State University and an improve comedian with the group The Light Finger Five. He edits mathpunk.net and is co-host of the podcast Math for Primates (with scientist and professional weightlifter graduate student and competitive weight lifter Nick Horton). He received the Pandora Award (Bronze) from Chris DiBona, Open Source Program Manager for Google, for his participation in the game Superstruct.

Klint Finley: What does it mean to be a (or, rather THE) “mathpunk”?

Tom Henderson: Ha! Okay. When I was maybe 20 years old, my high school girlfriend was telling me about a punk band called “Green Dave.” I told her that I found punk to be totally unimpressive, because it was a musical genre that, near as I could tell, was founded upon not knowing how to play your instrument.

She set me straight. The point of punk, she said, was that ANYone could get the experience of being in a band, of performing in front of peers, of expressing yourself, without there being a prerequisite to participate.

This blew my mind, and it was that conversation that turned me from a nascent douchebag into a self-aware poser.

Later, a girlfriend who had honest-to-god Southern California punk credibility — this was the time that The Offspring was getting radio play so, what, she was probably most deep in the hardcore scene? — got me interested in the music, and explained to me that punks could be astronomers or Shakespeare devotees with no clash. (Pardon the pun.)

So, these things are tucked into my brain. Later, I move to Portland. I move to Portland with the extensive plan of “take math classes until head blows up, or degree achieved.”

This is the first serious long-term plan I’ve ever had. I figure, Shit, I’m a guy with long term plans now? I need to re-roll my character sheet. I start with appearance (self-aware poser), and ramp up the mathematical angle, to cobble together a philosophy of punk rock mathematics.

It is this:

1) People use the average Joe’s poor mathematics as a way to control, exploit, and numerically fuck him over.

2) Mathematics is the subject in which, regardless of what the authorities tell you is true, you can verify every last iota of truth, with a minimum of equipment.

Therefore, if you are concerned with the empowerment of everyday people, and you believe that it’s probably a good idea to be skeptical of authority you could do worse than to develop your skills at being able to talk math in such a way that anyone can ask questions, can express curiosity, can imagine applying it in the most weird-ass off-the-wall ways possible.

This does not entirely mesh well with the actual practice of learning mathematics, because that is mostly time spent alone or in small groups being very very confused almost all the time, but it’s still the bullseye I keep in mind.

You know, it dovetails with the improv comedy thing… In improv, I’m guided entirely by audience reaction. It’s possible to improvise toward interest in a mathematical discussion in roughly the same way.

In a nutshell, what is the problem with math education in the US?

I have no idea. Let me instead describe the attitude that students have that is problematic, and you can reconstruct what must be wrong with it from that angle.

“Show me the steps.”

Many students want teachers to “show me the steps.”

They want a sequence of steps that they can perform that will give them an answer. This is not unreasonable; they know that their performance on exams, and therefore their performance on the All-Seeing Grade Point Average, is largely determined by being able to Do The Steps.

But “The Steps” are cargo cult mathematics.

The Steps are seeing the sorts of symbols that count as “right”, and trying to replicate that dance of steps. It turns out that the easiest thing in the world is to look at a student’s work, and tell the difference between “Knows what’s going on, made mistakes and dozed off” vs. “Can memorize steps, has no idea what’s going on.”

Now, the way that I explain mathematics, it sort of looks like I’m torturing the poor bastards. I handwave. I refer to certain groupings of symbols as “Alphabet soup” and write it down as a wild scribble with one or two symbols around it.

Because I’m trying to avoid showing The Steps and instead show them enough of The Idea that they can reconstruct what the steps MUST be.

Many students want to know the formulas, so that they can float them on top of their short-term memory, ace the exam, and then skim them off. Why do they want to know that?

Probably because, for their entire mathematical careers, math has been a sequence of Steps, and if they get them wrong, they get red pen, bad grades, No No No Look What You Did. Plus, bonus, there is no apparent relevance of these algorithms other than To Get The Answer.

What’s wrong with math education in the US? What’s wrong is, Whatever it is that makes my students uninterested in learning any more math than is required to minimize feeling stupid.

So that we’re clear, lots of my students are totally awakened to the interesting weirdnesses of mathematics. But, it takes some doing, and I can’t do it by myself. Hence the podcasts and the lunatic twitter stream and the plans for TV shows and online games and godknowswhat else.

I’m trying to get across that if you are highly motivating, if you have a high degree of fire and “Fuck yeah!” and “What, that’s impossible, but true!”, you can get students to express interest in theorems named after dead Hungarians.

I’ve always been “bad at math” (and things I see as related: chemistry, physics, mechanics, etc.) Is there any hope for me (for example, have I just had bad math education in the past?), or is it an unchangeable function of how my brain works?

That’s the real question, isn’t it? And I’m totally unqualified to answer it because I’m “good at math.” I tell students that “Math will wait for you until you are ready.”

One of the best Einstein quotes in this regard is the one where he says, “It’s not that I’m so smart; it’s that I stay with the problem longer.”

Well, have you had students who have been able to turn that around? Go from being “bad at math” to being really into it?

Yes.

Let me tell you a theory about math knowledge. A mathematical concept can be expressed in symbols (algebra), in pictures (geometry and diagrams), verbally, and numerically. This is a common theory; my additional spin is that math knowledge also exists as a performative concept. Like, the way that I direct the attention of the students (“If you ignore this alphabet soup for a minute, you can see it’s really just a product of two things…”) Or, the way I will use physicality. Like, the other week, I climbed onto the chair and then onto the desk while I was trying to explain slope.

ANYway, the theory goes that you don’t understand a mathematical concept until you understand it in TWO modalities. I do very well with visual knowledge, so my notes of understanding are full of color and pictures and mindmaps and arrows linking concepts, and I highlight the holy hell out of math books. However, I don’t believe I KNOW a concept until I can explain it verbally, because I can barely understand anything if someone just talks it at me.

First swipe is through my best modality, second swipe is through my worst modality. The whole “learning style” thing may be overstated, but it remains true that getting students to understand things in a variety of modalities seems like the way to go.

Maybe they don’t get the picture. So you ask them many verbal questions. (Questions, not explanations, 99% of the time.)

I don’t know if you saw the article I posted here at Technoccult a few weeks back, but it looks like the whole “learning style” thing is complete bunk.

Which makes sense, I mean who really “learns best” by having someone lecture at them for hours or reading a book with no illustrations anything?

There may be some people who CAN learn that way but I don’t know if anyone really learns best that way.

But yeah, multiple modalities always seems like a good way to go.

Sure, maybe. But as a teacher I have to do something, and those somethings may as well be grouped by, “What things do I need to prepare? Should I work out a lot of pictures, a lot of numerical ‘recall this fact…’, a strong narrative for the problem at hand?”

You know? It’s like… all this shit is imaginary.

invisible pink unicorn

Mathematics is like unicorn anatomy. You imagine this thing, and it doesn’t exist, yet it still comes with facts. I know how many legs a unicorn has.

So, if you’re trying to imagine a thing that doesn’t exist you can use multiple modalities like tweezers — “The thing isn’t a picture, but here’s what a picture of it would be like. It’s not a verbal thing, but here’s the best we’ve got.” The real thing is the underlying Platonic concept.

Post-Platonic? Now I wanna go make Xeroxes of Plato with his eyes X’d out. Thanks, punk-rock atemporality!

Whoa, tangent.

Let me expand briefly on one thing I know is wrong, and I hope that a networked learning environment can fix.

Networked learning might — might! — solve the example problem. Students need familiar examples, but what is familiar is different to different students. I’m hoping that we can teach the web to send people the right example.

Math for Primates

You’re the co-host of the podcast Math for Primates. What’s the purpose of the podcast, and who is your target audience?

Math for Primates started from the concept that there are certain things that humans are always interested in. Really, they like other humans. That’s the best thing. The internet used to just be a box with text, but once there was a critical mass of social information on it, it was a box with people inside! We love looking into boxes that have people in ’em!

So, the concept I pitched to Nick was, “Let’s talk about math from the platform of ‘Math that humans are likely to want to know, because it’s about other humans'”

Social conflict. Sex. Beauty.

It gives us an excuse to talk extensively about game theory. And, game theory is a key place to teach humans mathematics, because we seem to have some optimized “cheat detection” in our brains.

Let me give you an example, it’s something like, uh…

There are four face-down cards on a table. There is a rule: “If the number showing is even, then the back of the card MUST have a vowel.”

Now, given an E, 3, 8, D, what is the smallest number of cards you need to flip over to verify that the rule is being followed?

Maybe I fucked up the puzzle. But, anyway, the answer as I’ve phrased it is NOT E and 3.

You need to make sure that 8 has a vowel on the back, and you need to make sure that D does NOT have an even number on the back.

Everyone gets this wrong, basically. Well, non-mathematicians always do, and I’m pretty sure I got it wrong because I get every answer wrong on the first try. Punk as fuck.

Now, if you ask the same people a logically equivalent question: “You see four people. Two are drinking beer and two are drinking coke. Whose IDs do you have to check?”

No one says you have to check the ID of the coke drinker. Because who cares how old they are? If it’s the same puzzle, but phrased as a problem of possible social cheating, we nail it.

Wow. That’s interesting.

This is interesting to us. We think it’s fascinating that, given just a change of context, people can do logic puzzles more effectively.

So! We believe that if we put the context of mathematics into social situations, and maybe some other human-centered situations (like, we want to talk about group theory, but we will try and make it about “Symmetry” because that’s something that human eyes will pluck right out).

I have to say, that your podcast has made Game Theory seem a lot more approachable to me. I used to think of it as something that was mathematical and scary. And I guess it’s still mathematical, but it seems entirely approachable and not scary.

Precisely!

The thing about math is, you can only answer yes/no questions. How many questions in life are really just yes/no and not “it depends”? Very few. So, the problems that we can attack in mathematics must be very simple indeed.

It’s just that they have a large number of component parts sometimes, because we are trying to build a complex and nuanced model out of stuff that is so simple that it admits a “yes/no” answer, always.

We are talking about putting together an entire mathematical text starting from game theory as the first principles.

Start with relatively simple social games that we can understand. Simplify them until they admit mathematical analysis. Now, introduce the minimal set of tools to solve this problem.

That’d be great. Because what still scares me away game theory is knowing that most texts are still probably going to be incomprehensible to me.

They may well be. Don’t get me wrong, the learning curve is always steep. I tell my students, “You say you’re bad at math, but the truth is, HUMANS are bad at math.”

It takes a lot of quiet reflection to make any of it make sense.

So, our target audience is, humans. But, only humans who are willing to be surprised and confused, and who think that paradox is something to be explored rather than fled.

But not necessarily humans who already have a strong background in math.

Heavens no. We have been referred to as taking the “Beavis and Butt-Head approach to higher mathematics.” And we are very proud of that. This was coming from someone who hope to have on the show soon, with a doctorate in mathematics and a grown-up job and everything.

Superstruct Threats

On to something completely different… Can you tell us a little about superstructing and how you got involved with it?

Deep cleansing breath.

Sure.

Superstructing means to build upon something that is already there, right? To extend a structure, build on top of existing structures.

But, when Jane McGonigal and the Institute for the Future use it, they mean something pretty precise: “Superstructing: A new way of working together, at extreme scales, supported by game platforms and mechanics.””

“Extreme scale” means that an individual working alone for 5 minutes should be able to contribute to a project. But it also means that in principle you might be taking on some enormous problem space to explore collaboratively. And you’ll need hundreds of person-hours. The game platforms and mechanics provide the support. If you define some huge problem… ok, what do you do?

The designer of a good and superstruct-y game-for-good will have clear missions, things that you can do, ways to compete and cooperate. For points, for gear, for social status, whatever. The idea is that you can use game mechanics to extend human capabilities so that they are able to achieve goals that previously it would take a whole institution to do but you do it in such a way that you can also extend the power of extant institutions with the networked abilities of social primates.

The individuals form a network and get stronger. The institutions get large numbers of humans thinking and sharing and communicating, and get smarter. You’ve superstructed, built on what is there.

How I got involved: I’ve been wrestling with knowledge management for years. I have several linear feet of journals full of mindmaps, but, y’know, you can’t grep dead trees. Back when I was trying to use a file cabinet for knowledge management (ha ha ha ha) I tucked the printout of an NPR transcript (ha ha ha) into a file marked “Ludology”, because I was getting interested in play and games. It included an interview with performance and games researcher, Jane McGonigal. I’m pretty sure that this must have been after ILoveBees, the ARG she designed for the Halo launch.

Anyway, serendipity led me to clean out the hideous file cabinet, I see the Ludology file, I check to see what this McGonigal person is up to, and I find her New Yorker talk.

TOTAL HEAD EXPLODEY

I suddenly felt totally okay about playing EverQuest for three years and stacking up pizza boxes to my sternum, because, hell, there are lots of ways of getting in worse trouble living off Hollywood Blvd when you’re 23.

“Ah ha! I was doing research on early gameplay and networked collaboration! How wise of me!” And, lo and behold, she was starting a new game called Superstruct.
I played the game, drank the Kool-Aid, got the t-shirt. (I’m wearing it now, in fact.)

So what did you do as part of Superstruct?

I wanted to simultaneously win the game, and help it realize the potential I saw in Jane’s Big Idea. The first problem was that the interface was very bad. It would log you out constantly, it was hard to search, it was hard to keep track of what you had done so that you could nurture it.

It was totally gorgeous, the design was beautiful, but the functionality was not what the really hardcore lunatic Super-Empowered Hopeful Individuals (SEHIs) needed in order to shine. Filter failure, basically.

I remember taking a look at it from time to time and giving up within minutes of hitting the site. I couldn’t figure out how the hell to participate.

Right, that’s because when Global Extinction Awareness System released the report, it woke up a swarm of No Future assholes who did their best to disrupt the site. (Possibly government operatives were involved; one storyline got a researcher in jail due to the riots after the report came out. [No one was arrested in real life – .ed])

So, I decided that the interface itself was like our first boss fight. In-game, there was a story line of all the shenanigans that dedicated hackers and griefers can do…

So, obviously, the SEHIs needed to save the project by duplicating efforts on more resilient networks. I did not have the technical skills necessary to do exciting things, so what I did was tried to locate anyone who might help the interface be improved, and do the best social engineering I could manage.

Foundation (who is in Portland) wrote a screen-scraper that would relog in as often as necessary, so he could scrape the site and get interesting information.

He was able to use this tool to send mass messages; I suggested that what we needed was to wake up the SEHIs who were clearly interested but maybe turned off by the site.

So, we identified all SEHIs who had a minimal amount of activity (“Has joined a superstructure”) and sent them a “secret” message. Basically, we told them how bad ass they were (“You are the CORE SEHIs”), and where they could find additional off-site resources.

That’s the thing that I was really proud of. The project wouldn’t be good without lots of active people, and we did what we could to try and maintain excitement and intrigue in the face of a somewhat boring “There are no RSS feeds!” obstacle.

I also delivered an address from Open Source Scientists which people liked a lot. That was fun. I felt like people weren’t bringing their A game, so I basically told everyone, “I’m offering a resource as a prize for you to do something, and I think I will win this game even if I give you that prize.” It was cocky and snarky, and I got to show off my alarmingly large forehead.

What I really wanted to do was some data visualization so that we could reduce redundancies. Lots of people had really great solutions, but some of those solutions were duplicated.

I envisioned hundreds of superstructures circling each other like marine organisms, infecting and eating and mating with each other. Alas, I did not have the skills, nor the data. So as to remedy that I’m teaching myself Python and regular expressions for the next data analysis project that arrives.

Once I know what I don’t know about social network analysis and random graph theory and data mining, I’ll have a clear path toward datamancy: being able to convert information on what people are doing into game-able decision points.

Really, I just want to be able to look at people doing cool interesting things collaboratively, through a lens of computation, make a pretty picture, and strategize from there.

Maybe it will even work!

Sounds good. I think we can call it a wrap unless you have more…

Just one more thing. Tell everyone to go sign up for Evoke!

Evoke

Will do! I think I’ll give Evoke a shot this time.

From what I can tell, it’s got the secret sauce from Superstruct, packaged in a way that will make a jillion times more clear how to participate. (Jillion being a technical math term.) And, it’s about resilience, entrepreneurship, and helping other primates — it’s what the world needs!

How many zillions in a jillion?

A jillion is a squintillion with a zillion zeroes at the end. Glad I could clarify that.

Outlaw Biology

outlaw biology

Outlaw Biology was a DIY biology symposium held January 29-30 at UCLA. Here’s a list of workshops that may or may not have occurred:

1. Bioweathermap, Jason Bobe. With field-trips to the UCLA Arboretum and Hammer Museum (in cooperation with Machine Project

2. Learn to Design a DNA-based nanostructure using cadnano software, Philip Lukeman

3. Paint colorful microbes – luminescent, fluorescent, and pigmented – on do-it-yourself solid media. With a little time and luck, we’ll preserve the painted results in epoxy, like microbiological paintings in amber, Mackenzie Cowell

4. SKDB: Learn to use software tools for open source manufacturing and bioengineering, Bryan Bishop and Ben Lipkowitz

5. Use of Acinetobacter calcoaceticus strain ADP1 as a DIY bioengineering platform, David Metzgar

6. Ars Synthetica: Have an informed, ethical, and open dialogue on the emerging field of synthetic biology, Gaymon Bennett

7. Extract DNA from Strawberries, CSG Staff

8. Lactobacillus Plasmid Recovery and Visualization for fun and profit, Meredith L. Patterson

9. DIY Webcam Microscopy. Join us for a worldwide webcam hacking event and make your own 100x USB microscope for less than $10. We’ll provide the webcams and a live internet feed from other workshop locations across the world, from Bangalore to Australia. Find out more at diybio.org/ucam

10. Velolab, See the first Bicyclized Mobile Biology lab, Sam Starr

11. Learn about FBI Outreach: Promoting Responsible Research & Career Opportunities, Special Agent Edward You

12. Learn about LavaAmp: The Personal Thermal Cycler, Guido Núñez-Mujica and Joseph P. Jackson III

13. The HOX Gene Zodiac project. Learn about homeobox genes, body plans and the Chinese Zodiac, Victoria Vesna

Learn more at their web site.

(via Grinding)

U.S. Keeps Foreign Ph.D.s

foreign phds

Despite Fears of a Post-9/11 Drop, Most Science, Engineering Post-Grads Have Stayed

Most foreigners who came to the U.S. to earn doctorate degrees in science and engineering stayed on after graduation—at least until the recession began—refuting predictions that post-9/11 restrictions on immigrants or expanding opportunities in China and India would send more of them home.

Newly released data revealed that 62% of foreigners holding temporary visas who earned Ph.D.s in science and engineering at U.S. universities in 2002 were still in the U.S. in 2007, the latest year for which figures are available. Of those who graduated in 1997, 60% were still in the U.S. in 2007, according to the data compiled by the U.S. Energy Department’s Oak Ridge Institute for Science and Education for the National Science Foundation.

Foreigners account for about 40% of all science and engineering Ph.D. holders working in the U.S., and a larger fraction in engineering, math and computer fields. “Our ability to continue to attract and keep foreign scientists and engineers is critical to…increase investment in science and technology,” Oak Ridge analyst Michael Finn said.

Wall Street Journal: U.S. Keeps Foreign Ph.D.s

(via Beerken’s Blog)

Are humans organisms or living ecosystems?

the emerging science of human-microbe symbiosis has an even greater implication. “Human beings are not really individuals; they’re communities of organisms,” says McFall-Ngai. It’s not just that our bodies serve as a habitat for other organisms; it’s also that we function with them as a collective. As the profound interrelationship between humans and microbes becomes more apparent, the distinction between host and hosted has become both less clear and less important?—?together we operate as a constantly evolving man-microbe kibbutz. Which raises a startling implication: If being Homo sapiens through and through implied a certain authority over our corporeal selves, we are now forced to relinquish some of that control to our inner-dwelling microbes. Ironically, the human ingenuity that drives us to understand more about ourselves is revealing that we’re much less “human” than we once thought.

Seed: The Body Politic

(Thanks Social Fiction)

See also:

The BacterioSphere

Networks, Bacteria, and the Illusion of Control

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