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April 2011

Health, science, knowledge, access and elitism: Lawrence Lessig and science as remix culture

Remix-Lessig I have been an admirer and supporter of Lawrence Lessig's crusade for copyright reform and promotion of remix culture for many years. In a recent talk at CERN, Lessig applied his arguments for a fairer interpretation of fair use in the arts world to opening up the architectures for knowledge access in the world of science. The Harvard Law School professor made a compelling case for the ethical obligation of scientists [at least those in academia] to provide universal access to the knowledge they discover, and chastised those who practice exclusivity - those who choose elite-nment over enlightenment - as "wrong".

I intially discovered the talk by following a @BoingBoing tweet to a two-paragraph blog post about Lessig on science, copyright and the moral case for open access, which included an embedded 50-minute video of Lessig's presentation at CERN on 18 April 2011 entitled "The Architecture of Access to Scientific Knowledge: Just How Badly We Have Messed This Up".

I rarely take the time to watch any videos, and having seen many of Lessig's talks about copyright reform - live and online - I was preparing to simply retweet the link, and move on. But having been thoroughly irritated by a personal encounter with barriers to knowledge access during the [free] webcast from the otherwise enlightening and engaging Behavioral Informatics for Health event earlier this week, I was motivated to see and hear what Lessig had to show and tell. I was excited to discover that Lessig's talk was far more relevant to health and medicine - and the kind of universal access to crucial information that might help those outside of elite schools and hospitals better achieve positive health outcomes - than I initially anticipated.

Ajpm_journal Before sharing some of Lessig's insights and observations, I want to share the source of my personal irritation in encountering preventative measures erected to limit access to one of the two journals being showcased at the behavioral informatics event, a special issue on Cyberinfrastructure for Consumer Health from the American Journal of Preventative Medicine. When I investigated options for accessing some of the interesting articles being mentioned during the event, I discovered that

THIS SITE DOES NOT SUPPORT INSTITUTIONAL ACCESS

AJPM pricing options for individuals include a 12-month subscription to the journal for $277, or the purchase of individual articles for $31.50 each. The special issue being showcased at the event included 27 articles, which translates into a total cost of $850 for purchasing this one issue of the journal, whose mission is "the promotion of individual and community health".

Tbm_journal In contast, all the articles from the inaugural issue of the other journal being showcased at the event, Translational Behavioral Medicine, are freely available online, a policy much more in alignment with its mission:

TBM is an international peer-reviewed journal that offers continuous, online-first publication. TBM's mission is to engage, inform, and catalyze dialogue between the research, practice, and policy communities about behavioral medicine. We aim to bring actionable science to practitioners and to prompt debate on policy issues that surround implementing the evidence. TBM's vision is to lead the translation of behavioral science findings to improve patient and population outcomes.

I hope to post another blog entry with some notes from the behavioral informatics event, but in this post, I want to continue on with some of Lessig's commentary about science, knowledge, access and elitism. I'll embed a copy of the video below, follow it with some notes and partial transcriptions I made while watching, and finish off with a brief riff on science as a remix culture.

The Architecture of Access to Scientific Knowledge from lessig on Vimeo.

Lessig begins by talking about two motivations for his talk. The first is the late Supreme Court Justice Byron White, who was considered a liberal when appointed to the court by President John Kennedy in 1962, but became progressively more conservative, as evidenced in his authoring of the majority opinion in the 1986 case of Bowers v Hardwick, which upheld the criminalization of sodomy laws, and included the following statement:

Against this background, to claim that a right to engage in such conduct [sodomy] is "deeply rooted in this Nation's history and tradition" or "implicit in the concept of ordered liberty" is, at best, facetious.

Lessig calls this the White effect:

To be liberal / progressive is always relative to a moment, and that moment changes, and too many are liberal / progressive no more.

HarvardGazette_021111_Gita_019_605 The second, more recent, motivation was a Harvard Gazette article about Gita Gopinath, a macro-economist at Harvard who was born in India. After mentioning that Gopinath, a tenured professor, would like to have more time to read books that are not textbooks, the article concluded with the following sentence:

Still, the shelves in her new office are nearly bare, since, said Gopinath, “Everything I need is on the Internet now.”

Lessig notes:

If you're a member of the knowledge elite, then you have effectively free access to all of this information, but if you're from the rest of the world, not so much.

He goes on to observe:

The thing to recognize is that we built this world, we built this architecture for access. This flows from the deployment of copyright, but here, copyright to benefit publishers, not to enable authors. Not one of these authors gets money from copyright, not one of them wants the distribution of their articles limited, not one of them has a business model that turns upon restricting access to their work, not one of them should support this system.

As a knowledge policy, for the creators of this knowledge, this is crazy.

Lessig tells the story of his third daughter, who was diagnosed with jaundice shortly after her birth, and the concern he felt when the doctor expressed unexpected concern about possible complications. Due to his status as a Harvard professor, he had institutional access to many relevant articles in medical journals. When he calculated the cost for purchasing the 20 articles he tracked down, it would have cost $435 for someone who did not enjoy his level of elite status.

AAFP Even those journals which granted free access sometimes engaged in regulating access to parts of articles. For example, a February 2002 article on "Hyperbilirubinemia in the Term Newborn" in American Family Physician was available for free ... except for a crucial missing chart:

TABLE 4
Management of Hyperbilirubinemia in Healthy Term Newborns

The rightsholder did not grant rights to reproduce this item in electronic media. For the missing item, see the original print version of this publication.

Rather than architecting systems to maximize access to knowledge, Lessig suggests that "we are architecting access to maximize revenue" He also shares a chart from An Open Letter to All University Presidents and Provosts Concerning Increasingly Expensive Journals by Theodore Bergstrom & R. Preston McAfee on Journal Prices by Publisher and Discipline Type that shows the cost-per-page of purchasing articles from for-profit journals was 5 times higher, on average, than the cost in not-for-profit journals, leading him to wonder whether academia is creating it's own RIAA:

Really Important Academic Archive: RIAA for the Academy?

Sciencecommons Lessig is co-founder of the Science Commons, a translation of the Creative Commons license to promote open access in the scientific community, with four key principles:

  1. Open access to literature
  2. Access to research tools
  3. Data should be in the public domain
  4. Open cyberinfrastructure

PLoS_logo Lessig championed the Public Library of Science (PLoS) as an exemplar of these principles. Personally, I am very excited about the PLoS publication of a landmark study this week on Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network, by Weitzman, et al., based on data from the TuDiabetes online community, and another recent study by Wicks, et al., based on PatientsLikeMe community members with amyotrophic lateral sclerosis (ALS) published - and freely available - in the journal Nature Biotechnology, Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.

Having recently read a critique of Science 2.0, cataloging the shortcomings and/or failures of several traditional for-profit publishers to effectively capitalize on the Web 2.0 platform, it is encouraging to see some promising progress in sharing knowledge about chronic conditions in the not-for-profit world.

Lessig proceeds to review some of the issues surrounding the use - and misuse - of copyright in the arts, but I have already written about many of his arguments and examples from that domain in my notes from his keynote at the 2009 Seattle Green Festival. I'll simply note that in viewing his examples in this context, I was struck by the revelation that on a very basic level,

science is a remix culture

Traditionally, much of science has been the exclusive domain of professional scientists, who typically go to great lengths to cite prior work that is related to the experiments and results they report in peer-reviewed publications (indeed, some of the peers reviewing work submitted for publication are among those who are - or [feel they] should be - cited). With the rare exceptions of paradigm shifts, most of science is incremental in nature, and each increment represents a remix with a few added ingredients.

Vrm_header_stacked187 There are several promising signs that people without PhDs, MDs and other "terminal" credentials can participate more fully in the scientific discovery and dissemination process. I enumerated several of these efforts in an earlier post on platform thinking, but in the context of health and medicine - and Harvard - I do want to mention Doc Searls' recent post on Patient-driven health care in which he expands the idea of the patient as a platform and mentions efforts by , Jon Lebkowsky and to promote a vendor relationship management (VRM) model in which patients - and the data about their conditions - will be better able to participate in peer-to-peer collaborations with health care and health information technology professionals.

Lessig laments the current system in which authors - and peer reviewers - of scientific publications do much of the work for free, while for-profit publishers derive nearly of the financial benefits, and do so through restricting access to the knowledge produced by the authors. Given that much of the data used in the experiments reported in professional medical publications comes from patients (the PatientsLikeMe and TuDiabetes studies being particularly notable examples), it makes all the more sense to make the results of these experiments available to all patients ... and at some point, we all are - or will be - patients who might benefit from universal access to this knowledge.


Irritation Based Innovation

If necessity is the mother of invention, irritation is the father.

People can be motivated to make changes based on so-called positive emotions, but I would argue that anger is more often the spark for fueling innovation. Some people live by the credo

Don't get mad, get even.

But as Mohandas Gandhi so adroitly observed,

An eye for an eye makes the whole world blind.

Aristotle offers additional insight into the challenges of channeling irritation:

Anyone can become angry - that is easy, but to be angry with the right person at the right time, and for the right purpose and in the right way - that is not within everyone's power and that is not easy.

When the wronged can transform their anger in constructive ways, they produce benefits that often outweigh and outlast the instigating incidents.

ImMadAsHell-Network I've been thinking about the inspirational power of irritation for a while now. The numerous clips I've seen and heard over the past several days from the late director Sidney Lumet's 1976 film, Network, have inspired me to compile some examples of irritation being a factor in empowering people to take action. The famous line repeated by the late actor Peter Finch as newscaster Howard Beale - and many of his viewers - is particularly on-point:

I'm mad as hell and I'm not going to take this anymore!

I have often described my own work as irritation-based research: don't [just] get mad about something, create a research project and/or prototype to solve it! MusicFX was born out of irritation with music playing in a fitness center; ActiveMap grew out of frustration with colleagues being chronically late to meetings; Ticket2Talk was a response to a newcomer's awkwardness of meeting people and initiating conversations at a conference

I believe we are all productive - or potentially productive - but differences in our personalities, training and experiences lead us to contribute in different ways in different realms. When irritation strikes, we naturally gravitate toward the channels through which we are best able to express or transform our frustration. Research happens to be a channel that has proven useful for me, but over the years, I've encountered numerous variations on this theme, applied to a broad range of domains. For the purposes of this post, I'll focus on a subset, exploring examples of people demonstrating how to constructively channel irritation to

  • write a book
  • write a program
  • create a company

Write a book

HowWeDecide One of the most inspiring convocation keynotes I've ever seen was Jonah Lehrer's Metacognitive Guide to College, delivered at Willamette University last fall. After presenting a fun and fascinating whirlwind tour of neuroscience, psychology and sociology, in the context of a 5-point guide to how to succeed in (and through) college, the 27 year-old author of How We Decide entertained questions from the audience. My favorite question was asked by a student who wanted to know how Lehrer decides which questions to ask (or pursue). He answered that he wrote a book about decisions primarily because he is pathologically indecisive, and generally tends to begin with his own frustrations. [Update, 2012-Apr-01: A Brain Pickings review of Lehrer's new book, Imagine: How Creativity Works, includes his observation that "the act of feeling frustrated is an essential part of the creative process."]

More recently, in preparing slides for a guest lecture on human-robotic interaction, I highlighted the irritation that prompted Sherry Turkle to write her book, Alone Together: Why We Expect More from Technology and Less from Each Other. Turkle experienced a robotic moment several years ago while viewing live Galapagos tortoises at the Darwin exhibit showing at the American Museum of Natural History, when her 14 year-old daughter, Rebecca, commented "they could have used a robot". While Turkle had been growing increasingly concerned about the ways that robots and other technologies were changing our perspectives and expectations, this moment provided the spark that led her to take on the daunting challenge of writing a book. And this constructive channeling of irritation has sparked numerous conversations about the relative costs and benefits of online vs. offline interactions.

Write a program

image from upload.wikimedia.orgOne of the earliest articulations of irritation-based software development I encountered as by Eric Raymond, author of the 2001 book, The Cathedral and the Bazaar, in which he states the first rule of open source software:

Every good work of software starts by scratching a developer's personal itch.

Later in the book, he begins the chapter on The Social Context of Open Source Software with the following elaboration of this principle:

It is truly written: the best hacks start out as personal solutions to the author's everyday problems, and spread because the problem turns out to be typical for a large class of users. This takes us back to the matter of rule 1, restated in a perhaps more useful way:

To solve an interesting problem, start by finding a problem that is interesting to you.

More recently, in a March 2008 blog post articulating 37signals' response to a critique by Don Norman, Jason Fried invoked a principle and rationale to support designing for ourselves (a fabulous post which also includes related insights about editing, software feature curation and not trying to please everyone):

Designing for ourselves first yields better initial results because it lets us design what we know. It lets us assess quality quickly and directly, instead of by proxy. And it lets us fall in love with our products and feel passionate about what we make. There’s simply no substitute for that. ...

We listen to customers but we also listen to our own guts and hearts. We believe great companies don’t blindly follow customers, they blaze a path for them. ...

Solutions to our own problems are solutions to other people’s problems too [emphasis mine]. By building products we want to use, we’re also building products that millions of other small businesses want to use. Not all businesses, not all customers, not everyone, but a healthy, sustainable, growing, and profitable segment of the market.

Interestingly, Don Norman's perspective on design innovation appears to have evolved since that exchange: a view articulated in a controversial essay on Technology First, Needs Last: the research-product gulf, which appeared in the March 2010 issue of ACM Interactions. Although he does not cite irritation as a prime mover, Norman does call into question the influence of necessity on innovative breakthroughs:

I've come to a disconcerting conclusion: design research is great when it comes to improving existing product categories but essentially useless when it comes to new, innovative breakthroughs. ... Although we would prefer to believe that conceptual breakthroughs occur because of a detailed consideration of human needs, especially fundamental but unspoken hidden needs so beloved by the design research community, the fact is that it simply doesn't happen. ... grand conceptual inventions happen because technology has finally made them possible.

Create a company

MartinTobias-FastCompany-December2010 One recent articulator of irritation as inspiration is Martin Tobias, a serial entrepreneur and currently CEO of Tippr, who was profiled in a December 2010 Fast Company article on Innovation Agents:

The one common thread throughout Tobias' entrepreneurial journey: a healthy dose of anger. With Imperium Renewables, Tobias was "personally pissed at the climate damage that oil companies were doing,” he says. “When I started Kashless, I was personally pissed that my friends in the local bar and restaurant business didn’t have effective ways to use the Internet to get people to walk in the door to their businesses. I’m saving small businesses that are run by my friends. That’s an incredibly personal thing.”

That kind of righteous fury, according to Tobias, is the secret to any startup. “Find a problem that personally pisses you off and solve it, and you’ll be a good entrepreneur," he says. "The day that I wake up and I don’t have a hard problem to solve, I will stop being an entrepreneur."

PatientsLikeMe-logo The personal problem that motivated Jamie Heywood, Benjamin Heywood and their friend Jeff Cole to create PatientsLikeMe was the the struggle of their brother, Stephen Heywood, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 1998. They developed a company and web platform to enable patients to share and learn from each others' experiences, and track the course of their condition and treatment(s), enabling them to tell their stories in data and words. The company recently expanded from its initial focus on 22 chronic conditions (including ALS, Parkinson's disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants) to support patients suffering from any condition(s).

The story of the family's frustration - and response - also provided the inspiration for a movie, So Much, So Fast:

Made over 5 years, So Much So Fast tracks one family's ferocious response to an orphan disease: the kind of disease drug companies ignore because not there's not enough profit in curing it. In reaction, and with no medical background, Stephen's brother Jamie creates a research group and in two years builds it from three people in a basement to a multi-million dollar ALS mouse facility. Finding a drug in time becomes Jamie's all-consuming obsession.

As I get to know more Health 2.0 activists, advocates and platforms - some of whom I profiled in previous posts on social media and computer supported cooperative health care and platform thinking - and encounter more examples of their blessing, wounding, longing, loss, pain and transformation, I increasingly appreciate the innovative power of irritation ... especially when the source of the irritation is a matter of life and death.

In reviewing these examples, I am repeatedly reminded of the wisdom of Carl Rogers' profound observation:

What is most personal is most general.

There are, of course, many other ways that people channel their personal frustrations in innovative ways that benefit a more general population, and I would welcome the contribution of other inspiring examples in the comments below.

I will finish off with a video clip of the scene from the movie, Network, that I mentioned at the outset. It's interesting to note how many of the problems that contributed to Howard Beale's madness in 1976 are still - or again - prominent in today's world ... providing plenty of fodder for future innovation.


Social Media and Computer Supported Cooperative Health Care

Cscw2012-logo-100x100I've become increasingly aware of - and inspired by - the ways that social media is enabling platform thinking, de-bureaucratization and a redistribution of agency in the realm of health care. Blogs, Twitter and other online forums are helping a growing number of patients - who have traditionally suffered in silence - find their voices, connect with other patients (and health care providers) and discover or co-create new solutions to their ills. In my view, this is one of the most exciting and promising areas of computer supported cooperative work (CSCW), and in my role as Publicity Co-chair for ACM CSCW 2012 (February 11-15, Seattle) I am hoping to promote greater participation - in the conference - among the researchers, designers, developers, practitioners and other innovators who are utilizing social media and other computing technologies for communication, cooperation, coordination and/or confrontation with various stakeholders in the health care ecosystem.

Figure3-patient20 Dana Lewis, the founder and curator of the fast-paced, weekly Twitter chats on health care in social media (#hcsm, Sundays at 6-7pm PST), recently served as guest editor for an upcoming article on social media in health care for the new Social Mediator forum in ACM Interactions magazine. The article - which will appear in the July/August 2011 issue - weaves together insights and experiences from some of the leading voices in the use of social media in health care: cancer survivor, author and speaker "ePatient Dave" deBronkart promotes the use of technology for enabling shared decision-making by patients and providers; patient rights artist and advocate Regina Holliday shares her story of how social media tools are enabling her to channel her anger with a medical bureaucracy that hindered her late husband's access to vital information in his battle with cancer by writing on walls, online and offline; pediatrician Wendy Sue Swanson describes how she uses her SeattleMamaDoc blog for both teaching and learning in her practice of medicine; health care administrator Nick Dawson invokes the analogy of school in offering his perspective on the evolution of social media in health care, as it matures from freshman-level to graduate studies.

Spm_2010_logo In my social media sojourns, I've encountered many other inspiring examples of people, programs and platforms that are being used to empower patients to connect more effectively with information and potential solutions:

Cscw2011-logo-white It is important to note that health care has been an area of focus for CSCW in the past. For example, there was a CSCW 2011 sesssion on health care, and other papers on health care were presented in other sessions:

Cscw2010-logo There were also a number of health care presented at CSCW 2010:

There was also a CSCW 2010 workshop on CSCW Research in Health Care: Past, Present & Future with 21 papers.

My primary goal in this particular post is to increase awareness and broaden the level of participation among people designing, using and studying social media in health care. My most immediate goal is to alert prospective authors about the upcoming deadline for Papers and Notes - June 3 -  which has been moved earlier this year to incorporate a revision & resubmission phase in the review process, which was partly designed to accommodate the shepherding of promising submissions by authors outside of the traditional CSCW community who have valuable insights and experiences to share.

At some later phase, I'll start instigating, connecting & evangelizing other channels of potential participation, such as posters, workshops, panels, videos, demonstrations, CSCW Horizon (a category specially designated for non-traditional CSCW) and the doctoral colloquium. For now, I would welcome any help in spreading the word about the conference - and its relevance - to the health care social media community.