"Biologic medicine" treatments all engage the body in healing itself, typically involving the extraction, manipulation and re-injection of the patient's own blood or other bodily fluid. Regenokine treatment involves withdrawing a small sample of blood from the patient, heating it and then spinning it in a centrifuge to separate the constituent elements; the resulting yellow colored middle layer is then extracted and injected into the patient's problem area (e.g., the knee). PRP involves withdrawing blood and spinning it in a centrifuge, but does not involve heating, and - as the name suggests - the platelet-rich layer is extracted for injection. Bone marrow injections, involving stem cells, use a similar approach.
Unfortunately, the article reports that PRP, Regenokine and other "biologic medicine" treatments face special challenges in securing FDA approval:
The reason Kobe, A-Rod, and other athletes travel to Germany for their biologic treatments involves a vague FDA regulation that mandates that all human tissues (such as blood and bone marrow) can only be "minimally manipulated," or else they are classified as a drug and subject to much stricter governmental regulations. The problem, of course, is figuring out what "minimal" means in the context of biologics. Can the blood be heated to a higher temperature, as with Regenokine? Spun in a centrifuge? Can certain proteins be filtered out? Nobody knows the answer to these questions, and most American doctors are unwilling to risk the ire of regulators.
I don't know of any studies of Regenokine, but a 2008 pilot study of interleukin-1 receptor antagonistdid not demonstrate significant benefit to treating knee osteoarthritis demonstrated "statistically significant improvement of KOOS [Knee injury and Osteoarthritis Outcome Score] symptom and sport parameters", and a 2009 study reports that Autologous conditioned serum (Orthokine) is an effective treatment for knee osteoarthritis. According to a December 2011 post about PRP and Regenokine in the Wordpress blog, Knee Surgery Newsletter (which offers no information about the author), Orthokine was the brand name under which Regenokine was previously marketed, and Regenokine and Orthokine are both brand names for interleukin receptor antagonist treatment.
The Lehrer article also highlights doubts - or what should be doubts - about the effectiveness of the traditional alternative to biologic medicine treatment - surgery - describing the results of a 2002 peer-reviewed study appearing in the New England Journal of Medicine, A Controlled Trial of Arthroscopic Surgery for Osteoarthritis of the Knee:
Consider an influential 2002 trial that compared arthroscopic surgery for knee osteoarthritis to a sham surgery, in which people were randomly assigned to have their knee cut open but without any additional treatment. (The surgeon who performed all the operations was the orthopedic specialist for an NBA team.) The data was clear: there was no measurable difference between those who received the real surgery and those who received the fake one.
As I've noted before in the PRP thread here on my blog, I'm not a medical expert, and I don't even follow the medical literature about PRP or other treatments with any regularity (I discovered this article because I follow @jonahlehrer on Twitter). I have enjoyed a complete recovery of functionality and nearly pain-free use of my elbow following PRP therapy. I like to think that there is a causal relationship in my personal experience - especially after the failure of several other treatments I tried - but as noted in Lehrer's article, more evidence is required to support any general conclusions on the effectiveness of the treatment. Meanwhile, I'm happy that to see PRP and other biologic treatments gain greater recognition and awareness.
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 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.
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".
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.
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.
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.
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?
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:
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.
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 Brian Behlendorf, Jon Lebkowsky, Adrian Gropper and “e-Patient Dave” deBronkart 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.
Research is about innovation, and yet many aspects of the research process often seem steeped in tradition. Many conference program committees and journal editorial boards - the traditional gatekeepers in research communities - are composed primarily of people with a long history of contributions and/or other well-established credentials, who typically share a collective understanding of how research ought to be conducted, evaluated and reported. Some gatekeepers are opening up to new possibilities for innovations in the research process, and one such community is the program committee for CSCW 2012, the ACM Conference on Computer Supported Cooperative Work ... or as I (and some other instigators) like to call it, Computer-Supported Cooperative Whatever.
This year, CSCW is introducing a new dimension to the review process for Papers & Notes[deadline: June 3]. In keeping with tradition, researchers and practitioners involved in innovative uses of technology to enable or enhance communication, collaboration, information sharing and coordination are invited to submit 10-page papers and/or 4-page notes describing their work. The CSCW tradition of a double-blind review process will also continue, in which the anonymous submissions are reviewed by at least three anonymous peers (the program committee knows the identities of authors and reviewers, but the authors and reviewers do not know each others' respective identities). These external reviewers assess the submitted paper or note's prospective contributions to the field, and recommend acceptance or rejection of the submission for publication in the proceedings and presentation at the conference. What's new this year is an addition to the traditional straight-up accept or reject recommendation categories: reviewers will be asked to consider whether a submission might fit into a new middle category, revise & resubmit.
CSCW, CHI and other conferences have enhanced their review processes in recent years by offering authors an opportunity to respond with a rebuttal, in which they may clarify aspects of the submission - and its contribution(s) - that were not clear to the reviewers [aside: I recently shared some reflections on reviews, rebuttals and respect based on my experience at CSCW and CHI]. For papers that are not clear accepts (with uniformly high ratings among reviewers) - or clear rejects (uniformly low ratings) - the program committee must make a judgment call on whether the clarifications proposed in a rebuttal would represent a sufficient level of contribution in a revised paper, and whether the paper could be reasonably expected to be revised in the short window of time before the final, camera-ready version of the paper must be submitted for publication. The new process will allocate more time to allow the authors of some borderline submissions the opportunity to actually revise the submission rather than limiting them to only proposing revisions.
Papers and Notes will undergo two review cycles. After the first review a submission will receive either "Conditional Accept," "Revise/Resubmit," or "Reject." Authors of papers that are not rejected have about 6 weeks to revise and resubmit them. The revision will be reviewed as the basis for the final decision. This is like a journal process, except that it is limited to one revision with a strict deadline.
The primary contact author will be sent the first round reviews. "Conditional Accepts" only require minor revisions and resubmission for a second quick review. "Revise/Resubmits" will require significant attention in preparing the resubmission for the second review. Authors of Conditional Accepts and Revise/Resubmits will be asked to provide a description of how reviewer comments were addressed. Submissions that are rejected in the first round cannot be revised for CSCW 2012, but authors can begin reworking them for submission elsewhere. Authors need to allocate time for revisions after July 22, when the first round reviews are returned [the deadline for initial submissions is June 3]. Final acceptance decisions will be based on the second submission, even for Conditional Accepts.
Although the new process includes a revision cycle for about half of the submissions, community input and analysis of CSCW 2011 data has allowed us to streamline the process. It should mean less work for most authors, reviewers, and AC members.
The revision cycle enables authors to spend a month to fix the English, integrating missing papers in the literature, redoing an analysis, or adopt terminology familiar to this field, problems that in the past could lead to rejection. It also provides the authors of papers that would have been accepted anyway to fix minor things noted by reviewers.
This new process is designed to increase the number and diversity of papers accepted into the final program. Some members of the community - especially those in academia - may be concerned that increasing the quantity may decrease the [perceived] quality of submissions, i.e., instead of the "top" 20% of papers being accepted, perhaps as many as 30% (or more) may be accepted (and thus the papers and notes that are accepted won't "count" as much). However, if the quality of that top 30% (or more) is improved through the revision and resubmission process, then it is hoped that the quality of the program will not be adversely affected by the larger number of accepted papers presented there ... and will actually be positively affected by the broader range of accepted papers.
I often like to reflect on Ralph Waldo Emerson's observation:
All life is an experiment. The more experiments you make the better.
If research - and innovation - is about experimentation, then it certainly makes sense to experiment with the ways that experiments are assessed by the research communities to which they may contribute new insights and knowledge.
There is a fundamental tension between rigorous validation and innovative exploration. Maintaining high standards is important to ensuring the trustworthiness of science, especially in light of the growing skepticism about science among some segments of the public. But scientists and other innovators who blaze new trails often find it challenging to validate their most far-reaching ideas to the satisfaction of traditional gatekeepers, and so many conferences and journals tend to be filled with more incremental - and more easily validatable - results. This is not necessarily a bad thing, as many far-reaching ideas turn out to be wrong, but I increasingly believe that all studies and models are wrong, but some are useful, and so opening up new or existing channels for reviewing and reporting research will promote greater innovation.
I'm encouraged by the breadth and depth of conversations, conversions and alternatives I've encountered regarding research and its effective dissemination, including First Monday, arXiv and alt.chi. At least one other ACM-sponsored research community - UIST (ACM Symposium on User Interface Software & Technology) - is also considering changes to their review process; Tessa Lau recently wrote about that in a blog post at the Communications for the ACM, Rethinking the Systems Review Process (which, unfortunately, is now behind the ACM paywall ... another issue relevant to disseminating research). The prestigious journal, Nature, recently wrote about the ways social media is influencing scientific research in an article on Peer Review: Trial by Twitter.
I think it is especially important for a conference like CSCW that is dedicated to innovations in communication, collaboration, coordination and information sharing (which [obviously] includes social media) to be experimenting with alternatives, and I look forward to participating in the upcoming journey of discovery. And in the interest of full disclosure, one way I am participating in this journey is as one of the Publicity Co-Chairs for CSCW 2012, but I would be writing about this innovation even if I were not serving in that official capacity.
Having recently served as associate chair for both the CSCW 2011 and CHI 2011 Papers & Notes Committees, I've read a large number of papers, an even larger number of reviews, and a slightly smaller number of rebuttals. In participating in back-to-back committees, a few perspectives and practices that impact the process of scientific peer review have become clearer to me, and I wanted to share a few of those here. I believe all of these boil down to a matter of mutual respect among the participants, and wanted to delve more deeply into some resources that offer guidelines for respectful practices.
I want to start out with a brief review of The Four Agreements, by don Miguel Ruiz, as I believe they provide a strong foundation for how to best approach the review process, as well as other areas of life and work (and I'll include links to earlier elaborations on three of the four agreements):
Be Impeccable With Your Word: Speak with integrity. Say only what you mean. Avoid using the word to speak against yourself or to gossip about others. Use the power of your word in the direction of truth and love.
Don't Take Anything Personally: Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream. When you are immune to the opinions and actions of others, you won't be the victim of needless suffering.
Don't Make Assumptions: Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With just this one agreement, you can completely transform your life.
Always Do Your Best: Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgment, self-abuse and regret.
I see examples of these agreements being violated throughout all aspects of the review process. Reviewers say hurtful things about authors, their work and/or their papers in their reviews and/or online discussions. Some reviewers appear personally offended that authors would have the audacity to submit a paper the reviewers judge to be unworthy. Many reviews reflect implicit or explicit assumptions the reviewers are making about the paper, the work described by the paper, and/or the authors who have written the paper. Some reviews are so short that I have a hard time believing that the reviewers are really doing their best in fully applying their skills and experience to help us make the best possible decision on a paper (but I acknowledge this is an assumption).
Another framework that I believe is helpful to apply in this context is nonviolent communication (NVC), which is predicated on the assumption that everything we do is an attempt to meet our human needs, that conflict sometimes arises through the miscommunication of those needs, and that further conflict can be avoided by refusing to use coercive or manipulative language that is likely to induce fear, guilt, shame, praise, blame, duty, obligation, punishment, or reward. The Wikipedia entry for nonviolent communication offers four steps (that are very similar to some earlier distinctions I'd written about between data, judgments, feelings and wants):
making neutral observations (distinguished from interpretations/evaluations e.g. "I see that you are wearing a hat while standing in this building."),
expressing feelings (emotions separate from reasons and interpretation e.g. "I am feeling puzzled"),
expressing needs (deep motives e.g. "I have a need to learn about other people's motives for doing what they do") and
making requests (clear, concrete, feasible and without an explicit or implicit demand e.g. "Please share with me, if you are willing, your reasons for wearing the hat in this building.")
Drawing on both of these sources for inspiration, ideally, a well-written review would have the following characteristics:
Focus on the paper, vs. the underlying work or the authors. All comments address [only] what is written in the paper. They should not address the work described by the paper or the authors who have written the paper. In a blind review process, reviewers typically do not have first-hand knowledge of the work described in the paper beyond what is written; reviewers who do have first-hand knowledge should recuse themselves due to a conflict of interest (i.e., they were co-authors or collaborators on the work). Thus, any comments about the work (vs. what is written about the work) are based on assumptions.
Follow the principles of non-violent communication (NVC). In particular, use "I" statements wherever possible, and void any direct references to the authors. For example, rather than saying "You don't say how you do X", an NVC phrasing might be something more like "It is not clear to me from the paper how X was done", or rather than saying "Why didn't you do X?", re-phrasing this as "I believe this or a future paper would be strengthened if it included X, or at least a compelling argument as to why X was not done".
Be compassionate and generous. Assume that the authors were doing their best in composing the paper, and look for reasons to accept in addition to reasons to reject (the latter usually being more readily identified by people trained in critical thinking). I was particularly inspired by the use of generosity in the directives issued by the CHI 2011 Papers & Notes Chairs at the committee meeting. Perhaps it's the proximity to the holiday season, but I found the use of that term more resonant throughout the meetings than the more traditional (and technical) "reasons to accept" that are often promoted by chairpersons.
Reverse the golden rule. The golden rule is "Do unto others as you would have them do unto you". A variation on this theme - which I first encountered in a book about positive psychology called How Full is Your Bucket? - is "Do unto others as they would have you do unto them." Particularly in a multi-disciplinary conference, different norms may be at work. I've had some strong disagreements with reviewers who are used to receiving terse and potentially offensive reviews, who implicitly apply the golden rule and figure if they can take it in reviews of their own papers, so should the authors whose papers they are reviewing. I always try to convince them to break the cycle of violent communication, with varying degrees of success. In a blind review process, of course, reviewers don't know the identities of the authors, and so can't really know how they would "have you do unto them". But I believe it is best to err on the side of nonviolence.
The rebuttal process also offers an opportunity for applying these practices. I won't go into as many details about the rebuttals, but I will say that if there was a category for "best rebuttal" (along the lines of "excellent reviews" and "best paper awards"), I saw two rebuttals among the papers we discussed that were outstanding exemplars of effective rebuttals. These had several factors in common:
a heartfelt expression of gratitude for the constructive feedback provided by the reviewers (and the reviews for these submissions were excellent)
the correct, gracious and effective identification of misinterpretations by reviewers, and a gentle articulation of the intended interpretation
an honest acknowledgment of correctly identified errors or omissions by the reviewers, and an explicit statement of how these would be addressed in a revision (if accepted)
I also witnessed some angry rebuttals, some of which included disparaging remarks about the committee and/or the conference community, none of which had any positive influence on the ultimate decision made on those papers. I won't go into any further details, as I do not believe that would be constructive. However, I would encourage all authors to wait at least 24 hours after they recieve their reviews to even start composing their responses, as I believe this will lead to a more constructive engagement.
Due to the desire to respect confidentiality agreements, I won't disclose any specific reviews or rebuttals from the CSCW or CHI conferences as positive or negative examples, but I will conclude with a few rather extreme examples of negativity - which are so extreme they are humorous - in a blog post on Twisted Bacteria about peer review of scientific papers:
This paper is desperate. Please reject it completely and then block the author’s email ID so they can’t use the online system in future.
The biggest problem with this manuscript, which has nearly sucked the will to live out of me, is the terrible writing style.
The writing and data presentation are so bad that I had to leave work and go home early and then spend time to wonder what life is about.
The finding is not novel and the solution induces despair.
There are several more examples of violations of The Four Agreements and the principles of nonviolent communication available at Twisted Bacteria, and I'm grateful that the reviews I've seen (and written) in the CSCW and CHI communities do not reflect the extreme expressions found in this selection from the environmental microbiology community.
I hope that highlighting some of the more positive and constructive approaches one might take to peer reviewing (and rebutting) will promote a more mindful, respectful and effective process for all participants.
Jaron Lanier recently wrote about virtual reality and its potential application to learning, utilizing some evocative terms and offering an educational scenario that reminds me of a seminal 1997 paper that described how a Nobel prize-winning biologist fused with her objects of study. The Saturday Wall Street Journal article gave me a keener appreciation for the potential applications of virtual reality (VR) - immersive computer-generated environments that model real or imaginary worlds - and for the pervasiveness of object-centered sociality, a concept I first encountered via Jyri Engestrom.
Lanier's article is about new frontiers for avatars - "movable representations of ourselves in cyberspace" - and how they can be used to manifest somatic cognition - the mapping of human body motion "into a theater or thought and strategy not usually available to us" in which one's hands (or presumably, other body parts) can solve complicated puzzles more quickly than one's head (or conscious mind). The examples he gives of somatic cognition outside the realm of virtual reality include professional musicians, athletes, surgeons and pilots, and I found myself thinking of a documentary I saw years ago on heavy machinery, and the way that a crane operator who was interviewed described the bewildering array of levers as virtual extensions of his arms and hands.
After describing a software bug in an early VR system that gave his humanoid avatar a gigantic hand, Lanier generalizes homuncular flexibility as a more general principle: "people can learn to inhabit other bodies not just with oddly shaped limbs [gigantic hands], or limbs attached in unfamiliar places, but even bodies with different numbers of limbs [lobster avatars]". Dean Eckles generalizes this notion even further - in a 2009 blog post reviewing a 2006 article by Lanier on homonucular flexibility (which offers more details about the lobster) - to distal attribution: our propensity for attributing sensory perceptions to internal or external - or proximal or more distant - sources.
However, it is Lanier's reference to an experiment with elementary school children being turned into the things they were studying that I found most interesting [although I have not been able to track down the reference]:
Some [students] were turned into molecules, dancing and squirming to dock with other molecules. In this case the molecule serves the role of the piano, and instead of harmony puzzles, you are learning chemistry. Somatic cognition offers an overwhelming emotional appeal for education, because it leverages vanity. You become the thing you are studying. Your sensory motor loop is modified to incorporate the logic of a science, and you develop body intuition about that logic.
This idea of fusing or becoming one with the object of study is one of the two primary manifestations of object-centered sociality articulated in Karin Knorr Cetina's seminal paper, "Sociality with Objects: Social Relations in Postsocial Knowledge Societies", [Theory, Culture & Society, 1997, Vol. 14(4):1-30]. As I noted in an earlier post on place-centered sociality, the other manifestation of object-centered sociality - sociality (interactions and relationships) through objects, such as online photos, videos or even blog posts - is better known, at least among many of those who study online social media (and mediation). But Lanier's article evokes the manifestation of sociality with objects themselves, reminding me of what I earlier wrote about Knorr Cetina's articulation of how this can promote deeper investigation and learning:
[Knorr Cetina] looks specifically at knowledge objects, and how they are increasingly produced by specialists and experts rather than through a broader form of participatory interpretation. She argues that experts' relationships with knowledge objects can be best characterized by a the notion of lack and a corresponding structure of wanting [emphasis hers] because these objects "seem to have the capacity to unfold indefinitely": new results that add to objects of knowledge have the side effect of opening up new questions. This perpetual unfolding gives rise to "a libidinal dimension or dimension of knowledge activities" - an "arousal" and "deep emotional investment" - by the person studying the knowledge object. As an example, she describes the way that biologist Barbara McClintock, who won the Nobel Prize for her discovery of genetic transposition, would totally immerse herself in her study of plant chromosomes, identifying with the chromosomes and imagining how they might see the world - evoking an image (for me) of object-centered empathy more than sociality.
The prospect of empowering future Nobel laureates with virtual reality technology to engage with and virtually embody objects of knowledge at an early age is very exciting. Lanier mentions the Kinect camera for Xbox 360 made by Microsoft (his employer), which will likely put virtual reality technology in the hands (or homes) of millions of people in the near future.
The primary emphasis of Kinect marketing is on fun and games, but based on Lanier's article, and Knorr Cetina's insights into object-centered learning, Kinect might also provide a platform for a new approach to education. In an ideal world, of course, fun and learning would not be such distinct concepts ... perhaps this new technology will help promote a new dimension of convergence in the not-too-distant future.
I have been practicing structured procrastination while allowing a few blog posts to, uh, ferment a bit longer (not to mention other things I want to get done). As evidence, after reading Jonah Lehrer's recent post about unstructured procrastination - Are Distractable People More Creative? - I feel inclined to write about that, rather than finish the other partially composed posts ... not to mention other important items on my todo list. But I'll postpone writing about unstructured procrastination until I write a bit about structured procrastination.
Several years ago, I encountered Stanford Philosophy Professor John Perry's inspiring account of structured procrastination, which offers a more elaborate and erudite rationalization of a practice that I'd previously justified by way of British mathematician and philosopher Bertrand Russell's famous quote:
The time you enjoy wasting is not wasted time.
Perry defines structured procrastination as a practice in which one chooses to postpone working on the most important thing(s) one needs to do by working on other, less important, things. He finds that he can be tremendously productive by this dynamic prioritization, getting all kinds of things done while avoiding the thing(s) he thinks he should really be doing.
I have been intending to write this essay for months. Why am I finally doing it? Because I finally found some uncommitted time? Wrong. I have papers to grade, textbook orders to fill out, an NSF proposal to referee, dissertation drafts to read. I am working on this essay as a way of not doing all of those things. This is the essence of what I call structured procrastination, an amazing strategy I have discovered that converts procrastinators into effective human beings, respected and admired for all that they can accomplish and the good use they make of time. All procrastinators put off things they have to do. Structured procrastination is the art of making this bad trait work for you. The key idea is that procrastinating does not mean doing absolutely nothing. Procrastinators seldom do absolutely nothing; they do marginally useful things, like gardening or sharpening pencils or making a diagram of how they will reorganize their files when they get around to it. Why does the procrastinator do these things? Because they are a way of not doing something more important. If all the procrastinator had left to do was to sharpen some pencils, no force on earth could get him do it. However, the procrastinator can be motivated to do difficult, timely and important tasks, as long as these tasks are a way of not doing something more important.
Structured procrastination means shaping the structure of the tasks one has to do in a way that exploits this fact. The list of tasks one has in mind will be ordered by importance. Tasks that seem most urgent and important are on top. But there are also worthwhile tasks to perform lower down on the list. Doing these tasks becomes a way of not doing the things higher up on the list. With this sort of appropriate task structure, the procrastinator becomes a useful citizen. Indeed, the procrastinator can even acquire, as I have, a reputation for getting a lot done.
Although Perry doesn't describe it this way, having read and written about Dan Pink's book, Drive: The Surprising Truth About What Motivates Us (in the same post - ironically in this context - that I also wrote about David Allen's book, Getting Things Done ... which I still haven't read), I believe that Perry's practice of structured procrastination may be an unconscious prioritization of intrinsically motivating tasks over extrinsically motivated tasks: choosing to do things he wants to do, such as writing the essay, while postponing other tasks that others want him to do, such as grading papers or ordering textbooks. And as Pink points out, through his review of several studies, intrinsic motivations typically win out over extrinsic motivations. [Note that I do not mean to imply that Pink promotes or even condones structured procrastination; I'm quite sure Allen would not.]
Returning to Lehrer's rumination on the costs and benefits of distraction, he defines latent inhibition - the capacity to ignore stimuli that seem irrelevant - and cites a 2003 study showing that decreased latent inhibition is associated with increased creative achievement in high-functioning individuals, i.e., people who are more distractable may also be more creative. However, he points out that the study includes the important caveat that "low latent inhibition only leads to increased creativity when it’s paired with a willingness to analyze our excess of thoughts, to constantly search for the signal amid the noise" [and I'll note that one of my fermenting posts is all about signal vs noise]. Having recently been inspired by Lehrer's Metacognitive Guide to College, I'm glad he is not promoting distractability ... or, at least, not promoting unrestricted or unstructured distracability.
I would define distractability as a form of unstructured procrastination. Whereas structured procrastination is working on - or attending to - things that are important, but not the most important things, unstructured procrastination may involve attending to things that are not important at all (i.e., completely irrevelevant). Indeed, this blog post itself may be more of an example of unstructured rather than structured procrastination ... but I'm going to postpone further consideration of that train of thought ... and having indulged my impulse to fire off a quick blog post, I will turn my attention back to other, potentially more important, tasks.
Jonah Lehrer, the 27 year old author of How We Decide, gave the Opening Days convocation keynote at Willamete University last Friday. After being introduced by Willamette president M. Lee Pelton as "a humanist disguised as a neuroscientist", Lehrer offered 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. Having attended several convocations both as a student and a faculty member, I would rank his keynote as one of the best I've ever heard, rivaled only by one I heard in 1986, by Theodor Seuss Geisel (aka Dr. Seuss), when he received an honorary doctorate at the University of Hartford (so he really was a "doctor").
Leading off with a story demonstrating the ephemeral nature of many "great truths" (Oliver Wendel Holmes, Sr., discovering the great "truth" that the world smells like turpentine - specifically, "a strong smell of turpentine prevails throughout" - while on a nitrous oxide-induced hallucinogenic journey), Lehrer assured the new students that they will regularly encounter profound truths and discover new ideas ... few of which will have impact lasting beyond 72 hours, and nearly all of which will be forgotten soon after they finish college. The real value of a college education is learning how to think ... and to promote this process, he offered 5 tips.
Be an outsider
Innocentive.com is a platform for crowdsourcing research and development that succeeds primarily through the participation of outsiders. Companies post problem descriptions and offer prizes for solutions, and individuals and organizations outside the company submit potential solutions. Lehrer quoted a Harvard Business School study reporting that 60% of the posted problems are solved within 6 months, and that the key to solutions is being on the outside, i.e., being able to look at the problem from an outsider's perspective.
InnoCentive now boasts 175,000 "solvers" from more than 200 countries around the world. About 90% are individuals, 10% are organizations and 60% have masters degrees or PhDs. Last year, nearly 50% of the "challenges" posted on InnoCentive's web site generated a solution that was put to use.
Academics who polled InnoCentive's winning solvers discovered something "both startling and intuitively obvious," said Spradlin. "What they found was that typically ... the background of the solver who solved the problem" was "no less than six disciplines away" from the subject area in which the problem emerged. "What that means is, if all the Stanford PhDs in your chemistry lab could have solved the problem, they would have solved it already."
Lehrer reported that English poet Samuel Taylor Coleridge used to tell people he attended public lectures on chemistry in London "to improve my stock of metaphors", and encouraged students to take at least one class each semester outside of their field ... and "don't be afraid to be the lonely poet in chem class".
Learn how to relax
Lehrer described a study on people solving compound remote associates problems, for which Lehrer suggested the evocative acronym "CRAP". Another acronym, "RAT" (remote associates test), is more commonly associated with these kinds of problems - often posed on the Sunday Puzzle on NPR - in which three words are presented and the problem is to find a fourth word that relates to all of them (e.g., given the problem "broken, clear, eye", the solution is "glass"). The study revealed that the "flash of insight" or "Aha!" moment that occurs immediately before a solution can be reliably detected via functional magnetic resonance imaging (fMRI) and electroencephalography (EEG), and the alpha wave pattern closely resembles that of someone who has experience in meditation, i.e., someone who is able to achieve states of deep relaxation.
Contrary to the intuition many of us have when faced with a hard problem, which is to focus on the problem as hard as we can (I imagine this is why they are called "hard problems"), the solution in many cases is to simply relax and temporarily turn our attention to other things, and allow the solution to emerge more organically. I was reminded of one of my favorite lines of poetry, by Wallace Stevens:
Perhaps the truth depends on a walk around a lake.
Another observation by Lehrer - the brain knows more than you know, you just have to listen - reminded me of the way yet another poet, David Whyte, describes poetry:
Poetry is the art of overhearing yourself say things you didn't know you knew.
But I digress. Shifting from poetry to technology - and back to Lehrer's speech - Lehrer suggested that one of the most effective ways of listening to what you know is to turn off the gadgets that constantly inundate us with what others are saying ... reminding me of what Sherry Turkle, Kathy Sierra, James Surowiecki, Malcolm Gladwell, James Ogilvy, Dan Oestreich and other great thinkers have said about self-reflection vs. self-expression, and the recent New York Times article on digital devices deprive brain of needed downtime.
Make friends with lots of different people
Lehrer described the self-similarity principle (or perhaps homophily) as a natural tendency to associate with people who are like us (and avoid people who are not like us), and suggested that students guard against this tendency. A study by sociologist Martin Ruef and his colleagues at Princeton, in which they interviewed 600 entrepreneurs, revealed that the entrepreneurs with the highest informational entropy (i.e., most diverse social networks) were the most successful, and that the propensity to strike up conversation with potentially consequential strangers was a key indicator of this quality. The researchers estimate that entrepreneurs with highly entropic networks were 3 times more innovative than those with low entropy networks (though innovation is a notoriously difficult concept to measure).
College is a great place to forge new connections with a broad range of people, and so Lehrer encouraged students to take advantage of the opportunity to diversify their social networks ... which will seve them well long after they've forgotten all (or most of) the facts they will have learned while in school.
Don't eat the marshmallow
Another variation on the theme of intent focus vs. relaxation - or, at least, distraction - was illuminated through the story of the marshmallow task, which Lehrer wrote about in a New Yorker article on the secret of self control last May. Stanford psychology professor Walter Mischel conducted experiments with four year olds at the Bing Nursery School, including one named Carolyn, to explore delayed gratification:
Carolyn was asked to sit down in the chair and pick a treat from a tray of marshmallows, cookies, and pretzel sticks. Carolyn chose the marshmallow. ... A researcher then made Carolyn an offer: she could either eat one marshmallow right away or, if she was willing to wait while he stepped out for a few minutes, she could have two marshmallows when he returned. He said that if she rang a bell on the desk while he was away he would come running back, and she could eat one marshmallow but would forfeit the second. Then he left the room [for about 15 minutes].
Only 30% of the children were able to delay gratification for the full 15 minutes; the average delay of gratification was about 2 minutes. 13 years later, Mischel conducted extensive followup surveys to discover how the 600+ children had fared. The high delayers - those who were able to distract themselves for the full 15 minutes - averaged 200 points higher on the SAT, on average, than the low delayers - those who were unable to shift their attention to anything but the marshmallow, and succumbed to temptation within 30 seconds.
Lehrer instructed the students that "your task for the next four years is to learn how to control your attention. You control the spotlight" - use it wisely.
Inhale
Elaborating on a theme invoked by Dean Darlene Moore during the opening remarks to the event - in which she emphasized the primacy of the journey over the destination - Lehrer invited students to fully appreciate the experience of a college education. Highlighting the importance of embracing wrongology, Lehrer offered a great anecdote:
You get to share your opinion on Hamlet, and write long essays about how Plato, the guy who blew your mind last week, was actually wrong about everything.
In my own experience as a philosophy major years ago (and continuing ever since), education is about learning things, and then unlearning things; discovering a great truth, and then discovering that its opposite is [also] true. I can understand the appeal of fundamentalism, in clinging tenaciously to beliefs no matter what facts may present themselves, especially as fears, uncertainties and doubts are promulgated by those who would deign to decide for us, but I don't think we can learn much when we are not willing to be in the question(s).
Speaking of questions, during the question & answer period following his talk, my favorite question was by a student who asked how Lehrer figures out 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 ... mirroring my own tendency toward what I like to call irritation-based research ... or what Eric Raymond, author of The Cathedral and the Bazaar, describes in the context of open source programming:
Every good work of software starts by scratching a developer's personal itch.
In closing, I want to acknowledge that I have not yet read Lehrer's book, How We Decide, but as I noted in my earlier post on the warm welcome we enjoyed throughout Willamette Opening Days, my daughter, Meg, read the book over the summer, and after his speech she told me that many of the examples are covered more extensively in the book, which is next on my stack of "to-reads".
Finally, I want to loop back to some introductory remarks made by President Pelton, in which he quoted E. O. Wilson, the multidisciplinary scientist sociobiologist who contributed much to our understanding of ant colonies (and other societies and systems):
We are drowning in information, while starving for wisdom. The world henceforth will be run by synthesizers, people able to put together the right information at the right time, think critically about it, and make important choices wisely.
Lehrer, like Wilson, is clearly a great synthesizer, and I hope his convocation keynote - and the subsequent scope of a liberal arts education at Willamette - will help inspire a future generation of synthesizers, critical thinkers and wise decision-makers.
A sequence of encounters with various models, studies and other representations of knowledge lately prompted me to reflect on both the inherent limitations and the potential uses of these knowledge representations ... and the problems that ensue when people don't fully appreciate either their limitations or applications ... or the inherent value of being wrong.
Daniel Hawes, an Economics Ph.D. student at the University of Minnesota, analyzed the Science Secret for Happy Marriages, examining a study correlating comparative attractiveness of spouses and the happiness of marriages. He notes that many reports of the "result" - the prettier a wife in comparison to her husband the happier the marriage - did not note the homogeneity of the population, particularly the early stage of marriage for most subjects in the study, the lack of control for inter-rater variability in measuring attractiveness and happiness, or the potential influences of variables beyond attractiveness and happiness. These limitations were reported in the original study, but not in subsequent re-reports, leading Hawes to reference a very funny PHD Comics parody of The Science News Cycle and conclude with the rather tongue-in-cheek disclaimer:
This blog post was sponsored by B.A.D.M.S (Bloggers against Data and Methods Sections) in honor of everybody who thinks (science) blogs should limit themselves to reporting correlations (and catchy post titles).
A while later, in a blog post about his Hyptertext 2010 keynote on Model-Driven Research in Social Computing, former University of Minnesota Computer Science Ph.D. student and current PARC Area Manager and Principal Scientist Ed Chi offered a taxonomy of models - descriptive, explanatory, predictive, prescriptive and generative - and an iterative 4-step methodology for creating and applying models in social computing research - characterization, modeling, prototyping and evaluation. Most relevant in the context of this post, he riffed on an observation attributed to George Box
all models are wrong, but some are useful
All models - and studies - represent attempts to condense or simplify data, and any such transformations (or re-presentations) are always going to result in some data loss, and so are inherently wrong. But wrong models can still be useful, even - or perhaps particularly - if they simply serve to spark challenges, debate ... and further research. As an example, Ed notes how Malcolm Gladwell's "influentials theory", in which an elite few act as trend setters, was useful in prompting Duncan Watts and his colleagues to investigate further, and create an alternative model in which the connected many are responsible for trends. More on this evolution of models can be found in Clive Thompson's Fast Company article, Is the Tipping Point Toast?
Over the next few weeks, I encountered numerous other examples of wrongness, limitations, challenges and debate:
Kathryn Schulz, author of Being Wrong: Adventures in the Margin of Error, wrote an article for The Boston Globe about the bright side of wrong, in which she notes that inductive reasoning - generalizing from specifics - is one of our most powerful abilities, but it is only useful if we can recognize, admit and correct for the mistakes that are inherent to this type of reasoning.
My most significant recent encounter with wrongness, limitations and debate was via Susannah Fox, Associate Director at the Pew Internet & American Life Project and a leading voice in the Health 2.0 community, who offered a Health Geek Tip: Abstracts are ads. Read full studies when you can. She describes several examples of medical studies whose titles or abstracts may lead some people - medical experts and non-experts alike - to make incorrect assumptions and draw unwarranted conclusions.
In one case, “a prime example of the problem with some TV physician-'journalists'”, HealthNewsReview.org publisher Gary Schwitzer criticized Dr. Sanjay Gupta's proclamation that an American Society of Clinical Oncology study showed that "adding the drug Avastin to standard chemotherapy 'can slow the spread of [ovarian] cancer pretty dramatically'" as a dramatically unwarranted claim not supported by the study. I won't go into further details about this example, except to note with some irony that I had mentioned Dr. Gupta in my previous post about The "Boopsie Effect": Gender, Sexiness, Intelligence and Competence, in which he had complained that being named one of People Magazine's sexiest men had undermined his credibility ... and it appears that several people quoted in Schwitzer's blog post as well as in the comments are questioning Dr. Gupta's credibility, though I don't see any evidence that these doubts are related to his appearance.
The original pointer to the abstract came from a Washington Post blog post about "Wikipedia cancer info. passes muster", based on a study that was presented at the American Society of Clinical Oncology (ASCO). The post includes an interview with one of the study's authors, Yaacov Lawrence. I called Dr. Lawrence, and he was kind enough to fill me in on some of the details, which I then shared in a comment on Susannah's post. The study in question was presented as a poster - not a peer-reviewed journal publication - and represents an early, and rather limited, investigation into the comparative accuracy of Wikipedia and the professionally maintained database. At the end of our conversation, I promised to send him some references to other studies of the accuracy of Wikipedia, and suggested that the Health 2.0 community may be a good source of prospective participants in future studies.
In 2010 researchers at Kimmel Cancer Center, Thomas Jefferson University, compared 10 types of cancer to data from the National Cancer Institute's Physician Data Query and concluded "the Wiki resource had similar accuracy and depth to the professionally edited database" and that "sub-analysis comparing common to uncommon cancers demonstrated no difference between the two", but that ease of readability was an issue.
And what is the reference cited for this paragraph? The abstract for the poster presented at the meeting:
So it appears we have yet another example of a limited study - that was not peer-reviewed - being used to substantiate a broader claim on the accuracy of Wikipedia articles on" Science and medicine peer reviewed data" ... in a Wikipedia article on the topic of Reliability of Wikipedia. Perhaps someone will eventually edit the entry to clarify the status of the study. In any case, I find this all rather ironic.
As with the other examples of "wrong" models and limited studies, I believe that this study has already been useful in sparking discussion and debate within the Health 2.0 community, and I'm hoping that some of the feedback from the Health 2.0 community - and perhaps other researchers who have more experience in comparative studies of Wikipedia accuracy - will lead to more research in this promising area.
[Update, 2011-03-16: I just read and highly recommend another relevant article on wrongness and medicine: Lies, Damn Lies and Medical Science, by David H. Freeman in the November 2010 edition of The Atlantic.]
Tim O'Reilly wrote the definitive guide to the concept and term Web 2.0 back in 2005. The central theme from the outset was to view the web as a platform, and that view has evolved over time to encompass a collection of platforms with varying degrees of interoperability ... and varying degrees of openness to external innovation. His most recent thinking along this trajectory is captured in a sequence of blog posts, The State of the Internet Operating System and Handicapping the Internet Platform Wars, and a broader range of platform thinking (and doing) by others is captured in my notes from the keynotes at the Web 2.0 Expo organized by O'Reilly Media and TechWeb in San Francisco last month. While reading Tim's essay on Government as a Platform, in anticipation of the Gov 2.0 Expo two weeks ago, I started thinking about platform thinking in terms of de-bureaucratization and redistribution of agency ... and decided to stage a few photos and write a few words about this characterization.
The word bureau traditionally refers to a writing desk that includes an enclosure or cover for the writing surface and a set of drawers. The idea of a writing surface is very consistent with the concept of platforms - support for tools (paper, pen, laptop) and activities (reading, writing, coding) - but the more passive, restrictive and constricting ideas of enclosure and storage have come to represent the more dominant metaphor for bureaucracy. Similarly, the word agency can denote an individual capacity and willingness to act - conveying a sense of personal power - or it can refer to an organization that acts on behalf of others, a delegation of authority to experts which can have an unintended disempowering effect on those who are purportedly being served.
Thinking about the web - or government or other networks of organizations - as a collection of platforms entails seeing these entities not as ends but as means: essential building blocks upon which people can actively participate in the co-creation, coordination and dissemination of solutions to their problems, rather than providers of finished goods for passive consumers. In the opening chapter of Open Government, Tim offers his view on Government as a Platform, borrowing an evocative image for non-platform thinking as a "vending machine" view of government:
We pay our taxes, we expect services. And when we don’t get what we expect, our “participation” is limited to
protest—essentially, shaking the vending machine. Collective action has been watered down to collective complaint.
Instead, if I may borrow from John F. Kennedy, we should not ask what government can do for us, but rather what we can do with government. Reducing bureaucracy will require increased openness and malleability on the part of the platform providers and a more broadly distributed sense of agency - including an increased capacity and willingness to act - on the part of platform users ... and I suspect that the changes will not come easily on either side of the partnership (platformship?).
Some of the most promising prospects for platform proliferation are proceeding from the Open Government Initiative announced by the Obama Administration shortly after taking office last year. The OpenGov initiative seeks to promote trust, transparency, participation and collaboration, and many government agencies are implementing this through, in effect, opening their drawers and making more government data available.
The recent Gov 2.0 Expo highlighted many of the ways that individuals and groups inside and outside of government, at different levels and in different countries, are taking advantage of this and related developments to transform bureaucracies into more open platforms for participation. I won't go into them all here, but highly recommend the videos and slides from many of the Gov 2.0 speaker presentations that have been made freely available online. Tim's keynote, on Government as a Platform for Greatness, can be seen below:
I want to delve more deeply into three areas that I think are ripe for de-bureaucratization and redistribution of agency: health, education and science ... all of which might fit the "vending machine" model that Tim applied to government, possibly substituting "premiums" and/or "tuition" for "taxes" as input to the vending machine.
Health as a Platform
As part of the Open Government Initiative, the U.S. Department of Health and Human Services launched a Community Health Data Initiative to open the drawers of some of the health-related data kept by the government. A Health 2.0 Conference was held in Washington, DC, this week to bring together traditional and non-traditional agents who are taking advantage of the newly released government data as well as data and metadata collected from other segments of the health community. While the conference web site doesn't appear to reflect the level of platform thinking exhibited by O'Reilly Media conferences - e.g., no live stream of the presentations nor any archive of videos and/or slides (yet) - the agenda, as well as some post-conference summaries by HealthCentral, Health Populi and e-patients.net, suggest that platform thinking is alive and well in the health domain, in no small part due to those who have died or are unwell because of bureaucratic obstructions.
Regina Holliday presented a powerful pitch for platform thinking in Patients 2.0 ("engaged, empowered, equipped and expert"). She shares the compelling story of her struggles against bureaucratic obstructions to proper and timely diagnosis and treatment
of her late husband's kidney cancer, and advocates for full and free access to medical records by patients, who are - or can be - the most effective agents for their own medical care. Regina has channeled her anger with the system into words (her Medical
Advocacy Blog) and pictures (a photo of her mural 73 cents, named for the cost per page she was charged by a hospital to get a copy of her husband's medical records, is shown on the right); a full
timeline of Regina's advocacy can be found at the Open Health Project. She finished off her presentation with a call to arms (or
paintbrushes,
pens, microphones and cameras), inspired by a quote from Christine Kraft on the power of stories and platforms:
I can tell you something about stories: They drive engagement. What we don't typically consider (and this is why stories are so controversial) is that stories become legitimized by an audience, not a storyteller. That's why some stakeholders resist - they don't want to legitimize a story, a rad idea or tribute or pain, by giving it a platform.
Other individuals and organizations mentioned in the summaries include Trisha Torrey (Every Patient's Advocate), Josh Summer (Chordoma Foundation), Jonathan Kuniholm (Open Prosthetics Project), Jamie Heywood (PatientsLikeMe) and Amy Romano (Maternity Care 2.0). In addition to promoting de-bureaucratization and individual agency - and a proposal to think of patients as a platform (an interesting twist) - another Web 2.0 thread that appears to run through several of the presentations is the application of the long tail effect to the health domain - empowering people who suffer from relatively rare conditions and diseases to access and share vital information.
A new platform was announced at the conference by the Journal of Participatory Medicine: The Moment, a patient-produced video series in which people with medical conditions describe the "Aha!" moments when they shifted from being passive patients to active participants in managing their health and wellness. Health care may represent the area in which we have traditionally been most likely to defer to the authority of experts, perhaps best epitomized by the use of "patient" to describe people receiving care. Words are powerful, and I believe a key ingredient in the redistribution of agency in this domain will be coming up with a more appropriate term to denote a person seeking information about and/or treatment for a medical condition: something more akin to "participant" than "supplicant".
Education as a Platform
Our education system has traditionally encouraged patience and supplication on the part of the receivers of services (students). PBS recently aired an episode of Digital Nation that explores the transformation of learning and education in the digital age. In a segment on Education 2.0, author Mark Presky reviews a number of obstacles to learning posed by traditional schools, and argues that online platforms offer students unprecedented opportunities to take a more active role in finding and following their passions.
The recent TEDxNYED conference, curated by David Bill, provided another platform for challenging assumptions, adopting new tools and promoting new practices in education. As with the other conferences I've mentioned so far, there were many inspiring presentations; fortunately, videos of all the presentations are available on the conference web site (and on the TEDxTalks YouTube channel), and some speakers have shared their TEDxNYED slides on SlideShare.
Most inspiring (to me), and most relevant in the current context, was the presentation on Open Education and the Future by David Wiley, in which he defined education as "a relationship of sharing" and argued that "openness is the only means of doing education". Highlighting the "4 Rs" of web 2.0 tools and techniques - reuse, redistribute, revise, remix - he declared that new media technology offers an unprecedented capacity for sharing, and thus an unprecedented opportunity for education. The reigning bureaucracy in the 15th century - the Catholic Church - imposed draconian restrictions on even reading the bibles produced via printing press, that era's new media technology, leading to the de-bureaucratization and redistribution of agency known as the Protestant Reformation. Similarly, current bureaucracies are obstructing the dissemination of information via new media technologies and even employing technology to conceal and withhold its own potential. Fortunately, with the anticipated soaring demand for higher education globally - increasing from 120 million to 270 million over the next 25 years - he suggests that "education is on the edge of its own Reformation".
There is plenty of potential for platform thinking in primary and secondary education as well. Eva Moskowitz, founder of the Harlem Success Academy network of charter public schools, refers to the challenges of what I would call de-bureaucratizing what she calls the union-political-educational
complex. Other aspects of this complex are explored in Storming the School Barricades, a Wall Street Journal interview with Madeline Sackler about her documentary film,
The Lottery. I haven't seen the film yet, but I have certainly encountered bureaucratic barricades in our local school system, and my son's recent experience with a web-based math course offered by Apex Learning has heightened my appreciation for the prospect of online learning platforms to reclaim agency from union-political-educational complexes. The recent success of Christian conservatives in using the Texas State
Board of Education as a platform for propagating their revisionist
views on science and history via the traditional text book approval process may galvanize more people to become more active in seeking out new platforms for education.
Science as a Platform
The third area in which I see some growth in platform thinking is science. The reliance on experts may be more deeply entrenched in science than in most other areas, due to the nature of science itself: the discovery and/or creation of new knowledge. Expertise clearly plays a central role in this process, and much of science requires specialized techniques and expensive tools in order to make progress, but this can lead to a silo effect wherein scientists interact primarily with other scientists in their field. There are a number of platforms - online and offline - for translating scientific discoveries into narratives that can be better understood by more general audiences. However the real potential for platform thinking is to open up the drawers of the scientific bureaucracy in ways that allow people to not just read about science but to contribute in more meaningful ways.
The Sage
Commons Congress was recently convened to promote the Sage Commons, "a novel information platform being built by an international partnership of researchers and stakeholders to define the molecular basis of disease and guide the development of effective human therapeutics and
diagnostics". In his summary of the event, provocatively entitled "Engage
or become irrelevant", Cameron Neylon presents a compelling
argument for de-bureaucratization and the redistribution of agency:
“The public” is not some homogeneous group of barbarians at the gate of
our ivory towers. They are a diverse group, many of them interested in
what researchers do; many of them passionately interested in some
specific thing for a wide range of different reasons. In a world where
the web enables access and communication, and enables those with common
interests to find each other, people who are passionately interested in
what you are doing are going to be increasingly unimpressed if
avenues are unavailable for them to follow and contribute. And funders,
including those ultimate funders, are going to be increasingly
unimpressed if you don’t effectively tap into that resource.
There are strong interrelationships between science and health care (and science and education), and so many of the developments mentioned in earlier sections apply to the domain of science. Cameron Neylon's arguments for greater engagement are articulated in a context mostly concerned with the scientific modeling of diseases, diagnostics and therapies - clearly at the intersection of science and health care. However, platform thinking applies to other areas of science that are not as closely related to health care.
SETI@Home represents an early (1999) but relatively minimalist platform for engagement in science. Participants in this project simply run an application that uses spare cycles on their home computers to automatically download and analyze radio telescope data in the search for extraterrestrial intelligence. The NASA Clickworkers program (2000) offers a higher level of engagement, requiring participants to visually inspect and mark craters on downloaded satellite images of solar system bodies. The Science of Collaboratories project has an extensive list of other early projects, all of which were begun prior to the Web 2.0 era (but some of which have been revised to take advantage of new platforms).
In the U.S., one of the most important platforms for promoting the advancement of science has traditionally been The National Science Foundation. As an agency of the federal government, the NSF has its share of bureaucratic rules and regulations, but its policy of peer review in the consideration of grant proposals is at least a partial embrace of platform thinking. The review process involves significant engagement with external stakeholders - scientists who have no conflicts of interest with those submitting proposals - to evaluate the intellectual merit and prospects for broader impact of proposed scientific research in a wide array of fields. The NSF recently announced that scientists seeking funding will be required to submit data management plans for sharing the data they collect in their research as part of the proposal process. The agency also announced a new STAR-METRICS assessment that will provide a "rigorous, transparent review" of the impact of research on publications, patents, citations as well as entrepreneurship (new start-ups).
NSF tends to fund long-term research, with an average annual allocation $145,000 per grant. A number of alternative open science platforms / projects were profiled in a recent New York Times article, Seeking to Help Budding Researchers With a Click of the Mouse. All are attempting to open up not just the proposal process, but the funding process - which might be viewed as a proxy for peer review - as well, and to move down the long tail of research to fund people and projects that might not qualify for NSF funding. The Eureka Fund, the main focus of the article, is seeking $25,000 - via suggested donations of $25 each - to support a single pilot project investigating the energy ecosystems in emerging economies. Other platforms include SciFlies.org, which lists several potential projects in the range of $5,000 - $12,000, and FundScience.org, which is intended to support pilot projects up to $50,000 (though I don't see any projects listed). All of these platforms are intended to route around the established scientific bureaucracies in order to fund smaller-scale research outside of and/or at the intersection of the boundaries of traditional scientific disciplines. Unfortunately, I can't find any information about funding levels for SciFlies or FundScience, and while the EurekaFund has doubled its funding base in the past 2 months - from $1,300 when the NYTimes article was published on April 2 to $2,754.00 today - prospects for full funding do not appear very promising in the foreseeable future.
A Harris Interactive poll on What We Love and Hate About America released this week suggests that we have a far more favorable view of science and technology (75%) than education (33%), health care (32%) or government (23%). While we seem to admire science, it appears we generally prefer to do so at a distance. Given the pressing societal problems we face with respect to climate, energy and sustainability, the time seems ripe for a deeper engagement across a broader range of our population.
One of the things that struck me about Regina Holliday's presentation on Patient 2.0 was her emphasis on the power of the personal story. I'm reminded of an interview I saw with Nicholas Kristof, co-author of Half the Sky, where he observed that the articles he wrote about the oppression of women that focused on individual stories were far more effective in attracting attention and galvanizing action than articles that focused on the larger-scale statistics. I'm also reminded of a provocative commentary I encountered shortly after I wrote my review of Al Gore's film, An Inconvenient Truth, and included in an update:
There is no human or group, e.g., a brutal
dictator or evil empire, that is consciously trying to harm us
Human societies have not, generally speaking, evolved moral
rules about atmospheric chemistry (unlike, say, gay marriage)
The negative impacts are too far in the future, and not
generally perceived as a clear and present danger
The changes are happening too slow for our brains to
register
However, Paul Hawken offers a somewhat different perspective - or, at least, suggests a different possibility - in his book, Blessed Unrest:
We cannot save our planet unless humankind undergoes a widespread
spiritual and religious awakening … [but] What if there is already in place a
large-scale spiritual awakening and we are simply not recognizing it?
We may be in the process of a widespread spiritual and religious awakening, but until we achieve critical mass in the recognition of the large-scale problems that face us and the capacity and willingness to address them, the proliferation of smaller-scale platforms - in government, health care, education and science - through which we can participate more fully may help us make incremental progress toward bettering our collective lot.
I have long attributed the idea of preemptive self-disclosure - sharing information about oneself in order to forestall negative consequences from not sharing - to Paul Dourish, but over the years, I'd forgotten exactly why. A couple of recent articles I've read about disclosing what many might consider private information - coupled with the 19th and final post I recently wrote about my wife's anal cancer diagnosis, treatment and recovery - prompted me to seek out the exact source of this attribution: a 2003 paper he co-authored with Leysia Palen on Unpacking "Privacy" for a Networked World. The term "preemptive self-disclosure" does not appear in their paper, which is just as relevant now as it was 7 years ago (if not moreso). However, I found the section that I believe prompted the term - which may well represent my own shorthand for repacking the concepts - and will include an excerpt after briefly reviewing the more recent promptings.
Yesterday, Jeff Jarvis announced the title of his next book, Public Parts , which will be about "the end of privacy and the benefits of publicness". Jeff has written publicly about his private parts - the challenges he has faced over the course of his battle with prostate cancer - and his decision to preemptively disclose his experiences has yielded many unanticipated benefits, for him and for his readers:
In Public Parts, I’ll argue, as I have here,
that in our current privacy mania we are not talking enough about the
value of publicness. If we default to private, we risk losing the value
of the connections the internet brings: meeting people, collaborating
with them, gathering the wisdom of our crowd, and holding the powerful
to public account.
Toward the end of his short post, Jeff references an article written by his friend, Steven Johnson, In Praise of Oversharing, in which Steven writes of discovering his friend's cancer diagnosis a year ago via a Twitter status update ... and not finding that strange. He goes on to write of the "obsession" with privacy exhibited during the early days of the Internet, and how that now seems "quaint", although he also warns against claims that "the whole concept of privacy is teetering on the edge of obsolescence". Noting the erosion of Facebook's "fortress" of privacy into a "drive-through", he suggests that we are on the leading edge of the learning curve with respect to navigating "the valley of intimate strangers" that lies between privacy and celebrity (or, at least, publicity).
Writing of his friend's public disclosures about cancer, Steven notes:
Within days of his [Jeff Jarvis'] initial post, he had hundreds of comments on his
blog, many of them simply wishing him well, but many offering specific
advice from personal experience: what to expect in the immediate
aftermath of the surgery, tips for dealing with the inconveniences of
the recovery process. By taking this most intimate of experiences and
making it radically public, Jarvis built an improvised support group
around his blog: a space of solidarity, compassion, and shared
expertise. ...
In the end, it wasn't just a conversation for Jarvis, it was a
conversation for the thousands of other people who will come to those
pages through Google. There is an intensity and honesty to these public
disclosures that can be enormously helpful, next to the formal,
anonymous advice of a hospital cancer site. ... You get a truer account of what it actually feels like to
go through that terrible experience than any official page on the Mayo
Clinic or WebMD sites could ever offer.
The primary motivation behind my own initial foray into preemptive disclosure of potentially private [health] matters - the first blog post I wrote about my wife's anal cancer 5 years ago - was to reduce the overhead of sharing information about our progress - and periodic setbacks - with friends and family, going public so as to minimize the number of redundant emails and phone calls. However, it also created an unanticipated broader support group - which I'm sure is at least an order of magnitude smaller than Jeff Jarvis' - through which we've received encouragement from not only family and friends, but also from intimate strangers. Another unanticipated effect is that by opening sharing our experience, we were able to provide support - or at least personal information about the experiences - to others ... potentially far beyond those who have directly acknowledged that indirect support via comments and email. And we continue to receive gifts in the form of expressions of appreciation for our willingness to go public with what is, for many, very private matters.
Finally, returning to the CHI 2003 paper that I believe first gave rise to my awareness of preemptive self-disclosure, I want to include a relevant except - though I recommend the entire paper - from the section entitled "The Disclosure Boundary: Privacy and Publicity". It's worth noting that although the paper addresses and/or anticipates several of the themes raised this week by Steven Johnson, it was written in 2002, before the advent of boundary-challenging social networking services such as Foursquare, Twitter, Facebook and MySpace - although I believe Friendster may have been on the scene by that point - and is based largely on a book by social psychologist Irwin Altman published in 1975. To me, it demonstrates how forward-thinking Altman, Palen and Dourish were [/are], how good science - like good art - is always ahead of its time, and how much unpacking remains to be done in the continuously evolving landscape of privacy and publicity in our increasingly networked world:
As Altman theorizes, privacy regulation in practice is not simply a matter of avoiding information disclosure. Participation in the social world also requires selective disclosure of personal information. Not only do we take pains to retain certain information as private, we also choose to explicitly disclose or publicize information about ourselves, our opinions and our activities, as means of declaring allegiance or even of differentiating ourselves from others (another kind of privacy regulation). Bumper stickers, designer clothing, and “letters to the editor” deliberately disclose information about who we are. We sit in sidewalk cafes to “see and be seen.” We seek to maintain not just a personal life, but also a public face. Managing privacy means paying attention to both of these desires.
Furthermore, maintaining a degree of privacy, or “closedness” [from Altman's 1975 book, The Environment and Social Behavior: Privacy, Personal Space, Territory and Crowding], will often require disclosure of personal information or whereabouts. The choice to walk down public streets rather than darkened back alleys is a means of protecting personal safety by living publicly, of finding safety in numbers. We all have thoughts or facts we would like to keep secret, but most of us also need to ensure that others know something about ourselves, for personal or professional reasons. For some, this management of personal and public realms is analogous to the job of a public relations agent who needs to make their client available and known in the world, while at the same time protecting them from the consequences of existing in this very public sphere. Celebrities operate in this space, but so do many lesser-known people: academics, for example, often feel compelled to maintain web pages, not only to advertise their expertise and experience, but also to keep requests for papers and other inquiries at bay. Therefore, one of the roles of disclosure can ironically be to limit, rather than increase, accessibility. Views of privacy that equate disclosure with accessibility fail to appreciate this necessary balance between privacy and publicity.
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