Preemptive Self-Disclosure: Still Unpacking Privacy for a Networked World
Wanted: a new word for "patient" ... but which one?

Platform Thinking, De-Bureaucratization and the Redistribution of Agency

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.

Bureau as enclosed storage Bureau as platform

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.

image from covers.oreilly.com 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?).

OpenGov-logo 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.

Gov20expo-logo 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

Health20dc-300x51 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.

73centsReginaHolliday 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.

TEDxNYED-logo 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".

image from static.thelotteryfilm.com 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.

sagecongress 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@HomeSETI@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).

image from www.nsf.gov 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.

image from moviebanter.files.wordpress.com 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:

Dan Gilbert, author of Stumbling on Happiness, has posted a blog entry on An Inconvenient Truth, entitled It's the End of the World as We Know It and I Feel Fine, which includes a copy of his LA Times op-ed article on If Only Gay Sex Caused Global Warming. The article lists four factors that may help explain why more people aren't more concerned about global warming:

  • 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.

comments powered by Disqus