Updates from December, 2013 Toggle Comment Threads | Keyboard Shortcuts

  • feedwordpress 18:12:37 on 2013/12/11 Permalink
    Tags: genomics   

    Gutenberg, Genomics, and the Literacy/Literature Spiral 

    Imagine someone at the time of Gutenberg seeing his converted wine press capable of printing books.  “Who needs all these books?  No one can read them, anyway,” they might think.

    The full impact of the the literacy/literature spiral this invention triggered would have been impossible to predict.  The bible would be translated into “vulgar” languages, no longer requiring the translation (and interpretation) services of the priestly class to control the flow of information to the lay people.

    Medical Illustration, circa 1604.

    Medical Illustration, circa 1604.

    This remarkable upward spiral of knowledge was a chicken-and-the egg situation.  It required literature for people to read, but it required literate people to produce the literature.  It played a key role in the Age of Enlightenment as well as the Scientific Revolution.

    Since his invention, millions of books have been printed.  For better or worse, from Shakespeare to Hitler, many changed the world.  Many books were redundant, many were just plain wrong, but the overarching principle of freedom of the press became a hallmark of what many consider a civilized society today.

    Fast forward 550 years to today’s genomic revolution. Like the printing press, we are witnessing a new technology that is presenting us vast potential.  And like the book, we are facing a new literacy/literature spiral.  And we are facing a priestly class that seeks to intersperse themselves between our information and our use of it.

    The notion that a federal agency can control information of our genes, and assign professional “gatekeepers” to control and interpret this information, is absurd.

    Jonas Salk pointed out that we are the first generations of the first species to have evolved to understand our own evolutionary makeup.  In Survival of the Wisest, he points to the need for a new understanding of our role in evolution, what he called conscious evolution.

    I don’t think that this wisdom is going to come from federal agencies.  Nor do I think that depriving people’s access to their own genetic information is going to advance the cause of science, or continue the principles of the Age of Enlightenment that have contributed so much to the advance of civilization.

    We need to embrace a new life science literature/literacy spiral, not inhibit it by attempting to control it by an information priestly class.  Medicine today is largely “medicine by body part.”  Physicians may deal with Ears, Nose, and Throat, but Dentists deal with Teeth, an entirely different academic discipline, using a different insurance system.  As we discover the underlying genetic similarities of cancer, for example, we may find that the hierarchies with which we characterize them (e.b. some colon and breast cancers being nearly the same). These hierarchical distinctions are not just nomenclatural, but also the source of many of the power struggles in the various professional associations, billing codes, and financial reimbursement.

    Entangling our future medical knowledge with the perversity today’s bewildering political, economic, and administrative hierarchies is not going to advance our knowledge, but rather exacerbate an already complex situation.

    Another huge issue is the presumption that reading genetic information is a medical issue, an FDA “test” to be controlled as such.  But medicine today is largely a “fixit” enterprise, fixing what’s wrong.  We do knock-out studies, deleting a gene from a mouse, and then looking to see what went wrong.  This is a bit like Martians trying to understand a 1950’s television by removing vacuum tubes.  Noticing that the set squealed after a certain tube was removed, they claim discovery of the “anti-squeal” tube.  This is a highly replicable result, so it must be scientifically valid.

    Our life science literature/literacy spiral must move beyond today’s “negate the negative” assumptions.  Fixing everything that is wrong with a living system does not necessarily make it right.  Trying to put a tail back on a cat is likely to cause more harm than just letting the cat adapt to become a tailless cat.  Understanding the cats resilience and adaptation mechanisms is a a far more complex form of information – and one that is critical to our full understanding of life sciences.   Regulating and restricting the flow of genetic information in terms of today’s perversely incentivized disease model is a huge step backward in advancing our understanding of ourselves.

     

     

     

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  • feedwordpress 17:54:39 on 2013/11/19 Permalink
    Tags: workshops   

    “Towards A Universal Name Space” – Dec 6, 2013 Workshop at MIT 

    We will be meeting at the offices of the W3C at MIT.

    The success of the World Wide Web was due to an amazingly simple set of initial conditions.  In Weaving the Web Tim Berners-Lee wrote,

    What was often difficult for people to understand about the
    design of the web was that there was nothing else beyond URLs, HTTP, and
    HTML.  There was no central computer “controlling” the web, no single
    network on which these protocols worked, not even an organization anywhere
    that “ran” the Web. The web was not a physical “thing” that existed
    in a certain “place.” It was a “space” in which information could exist.”
    Today’s health IT landscape has taken a wildly different approach.  The HITECH funding supported a top-down, “Castles and Drawbridges” approach, focusing on enterprise-centric information systems that are then supposed to be interfaced.  Whereas Google has given us immense power to find information quickly and in context, healthcare has stuck with primitive categorization scheme akin to libraries using card catalogs organized by card catalogs using the Dewey Decimal System, everything in its place and a place for everything.  At it’s root, medical nomenclature is based on assumptions of Aristotle’s law of the excluded middle – things can be either A or Not A, but not both.  We roll these assumptions up in to Boolean Lattices, layer upon layer of hierarchical decomposition which appear to give us precision and consistency. In reality, however are being dragged into a morass of exploding complexity, and our attempts to improve the situation are like trying to get out of a hole by digging it deeper. The hospital, Peter Drucker said, is the most complex organization in our society.  Over and above the complexities of modern medicine and discoveries in the life sciences, we have overlaid immense technical, economic, and political complexities in recent years.
    It is questionable, whether we have the intellectual paraphernalia to deal with this level of complexity.
    Taking lessons learned from the web, this invitation-only workshop will look at alternatives technology to get out out of the complexity morass.  We will examine Linked Data, using RDF and Semantic Web technology to provide a flexible model for linking health information at the patient level.  Rather than locking patient information into information “castles” and trying to establish a network of “drawbridges” to interface everything, an alternative approach would be to look at Health IT as creating an “information space” within which health information could exist.  This would become a large-scale, fine-grained network of information, giving us great freedom to rethink privacy, security, and provenance, in addition to supporting hierarchical structures as appropriate. (Here is a conversation between Ward Cunningham, creator of the Wiki, and Tom Munnecke, one of the architects of the VA VistA EHR system, comparing how their designs started from simple initial conditions.
    A critical first step in this architecture is to define a URI (Universal Resource Identifier) or similar framework that is capable of naming all health information at .  What would this URI look like, and how could it facilitate advanced health IT?
    This workshop is a continuation of one at MIT in April, 2013, as well as “RDF as A Universal Health Exchange Language” in Encinitas, CA. June 2013.
    We will be meeting at MIT, courtesy of W3C, at Stata Center,  Friday, Dec 6 from 10AM to 2 PM
    We are looking for “unencumbered thinkers” to participate in this workshop.  If you are interested in attending, please email munnecke@gmail.com

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  • feedwordpress 15:34:34 on 2013/10/08 Permalink
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    Underground Railroad Banquet Oct 24 at VistA Expo in Seattle. 

    I’ll be holding the next Underground Railroad Banquet at the the VistA Expo in Seattle on Oct 24. This is a continuation of the banquets I’ve been holding over the years, starting with in 1982 with an award to Chuck Hagel for his support in the early roll-out of VA’s VistA. 

    Here is some more information about the history of this group.

    And here are some YouTube videos from previous banquets.

     

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  • feedwordpress 17:05:25 on 2013/10/03 Permalink
    Tags: ,   

    A Brief History of the Underground Railroad. 

    I was part of a small group of programmers (called Hardhats) recruited to the VA in the late 1970’s to work on what would eventually become the VistA Electronic Health Record system.  Ted O’Neill, who had supported the funding of the development of ANS MUMPS from NIH and later National Bureau of Standards (now NIST), moved to the VA to develop an open, public domain version of a modular, decentralized hospital information system that was dedicated towards improving the clinical care in the VA.

    This was in an era dominated by mainframe computers, managed by centralized data processing staffs doing largely batch processing of punched cards.  The notion of a network of interactive terminals connected to decentralized minicomputers was a radical notion at the time, and was threatening to the centralized data processing department.

    This lead to a fierce bureaucratic battle between the decentralists and the centralists.  Ted O’Neil and Marty Johnson hired MUMPS programmers under local hospital management, both to insure that they worked closely with the actual end users, and to shield them from the conflicts that raged in Washington.  Eventually, Ted O’Neill was fired, several of the hardhats were fired, and central office tried to shut down the MUMPS effort.  I was demoted, and $500,000 worth computers were locked up in my hospital basement, unused.  The central data processing department told upper VA management that minicomputers could not possibly be used for large scale computing, and that only a centrally managed mainframe approach could provide the necessary functionality.

    The hardhats continued to develop the software, cooperating on a peer-to-peer basis, and working closely with hundreds of doctors, nurses, and other clinical personnel. By 1981, we had developed a toolkit (the File Manager, Kernel) that supported a core system that could handle packages for ADT (Admissions, Discharges, and Transfers), Pharmacy, Scheduling, and Laboratory.

    In 1981, VA Chief Medical Director Donald Custis visited the Washington VA medical center to see our software in operation. He was surprised to find a working system, enthusiastically used by clinical staff, based on very economical minicomputers.  He quipped, “It looks like we have an underground railroad here.”   I grabbed the name, and started passing out 500 VA Underground Railroad business cards.

    In 1982, I organized the first Underground Railroad banquet in Washington, DC, and presented then-Deputy VA Administrator Chuck Hagel with an “Unlimited Free Passage on the Underground Railroad” certificate.  I also started handing out certificates for “Outstanding Engineering Achievement” to programmers for their contributions to VistA, and special VIP membership cards, with a 1982-era Motorola CPU chip laminated to the engine of the logo.

    I am planning the next banquet October 24, 2013 in conjunction with the VistA Expo meeting in Seattle.  I will be delivering a “State of the Underground Railroad” address, discussing how many of the original issues are still around, 31 years later.

    For example, I had noted that in a bureaucracy, everyone wants things centralized below them and decentralized above them.  Given the technology of the day, we focused on the hospital as the “anchor point.”  Today, however, this has moved up to Capitol Hill.  Both  Senate and House committees have discussed what language to use in EHR systems.  The $1b disastrous Integrated Electronic Health Record effort is an effort in mega-centralization.  DoD continues it’s Humpty Dumpty systems development approach, breaking systems into pieces and then trying to integrate them back together again, even after a 40 year track record of failure.

    VistA’s approach to a patient- and provider- centric model has repeatedly proven it’s merit.  Our approach of involving thousands of clinical users – not just a few IT “experts” – has also proven itself.  Open source software, agile development, use of online fora, metadata-driven architectures, and email-based messaging are all innovations of VistA that are more current than ever.

    VistA was much more than just a collection of programs.  It was a community of users, a framework for collaborative development, and a toolset for “meta” level programming that is rarely understood by outsiders who stare at the source code.  Just as one cannot understand Wikipedia and the Wikipedian community by staring at the source code driving the underlying wiki, we cannot understand VistA simply by looking at the source code.

    I hope that the Underground Railroad Banquet can help communicate some of these broader implications of the VistA framework, as well as look forward to the next generation of VistA software.

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  • feedwordpress 17:07:18 on 2013/09/07 Permalink
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    Adm. Harold Koenig at “RDF as Universal Health Language” workshop 

    Vice Adm (ret) Harold Koenig, MD, discusses what doctors need from health IT at the New Health Project workshop on RDF as a Universal Health Language in Encinitas, Ca. In his 34 year career with the Navy, Adm. Koenig was Deputy Assistant Secretary of Defense, Health Care Operations, 1990-1994, Surgeon General of the Navy, and commander of the Balboa Naval Hospital in San Diego. The chair he is sitting on is a time machine I am building for my children’s science activities. Unfortunately, it isn’t completed yet, so it’s only as good as your imagination.

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  • feedwordpress 17:02:48 on 2013/09/07 Permalink
    Tags: Linked Data, Maureen Coyle, Semantic Web, Tim Berners-Lee,   

    Open Letter to Maureen Coyle about VistA Evolution 

    Dear Maureen,

    It was good meeting you at the Second Annual OSEHRA Summit meeting yesterday.  It looks like you really have your hands full with your work on planning the evolution of VistA.  I thought your question, to the effect, “How do we decouple our information architecture from the organization chart?” was right on target.  I addressed this my recommendations to Chuck Hagel in a previous open letter:

    Decouple the IT architecture from the Organization Chart.  The designs that I’ve seen coming from the DoD are enterprise-focused, “baking in” all of the stovepipes, organizational turf wars, and protecting rice-bowls of the many political, economic, and professional constituencies hoping to influence the architecture.  Instead of patching together an “integrated system” of point-to-point connections, we need to move to a broader vision of creating a common information space.  Note the words of Tim Berners-Lee in his design of the World Wide Web:

    What was often difficult for people to understand about the design of the web was that there was nothing else beyond URLs, HTTP, and HTML.  There was no central computer “controlling” the web, no single network on which these protocols worked, not even an organization anywhere that “ran” the Web. The web was not a physical “thing” that existed in a certain “place.” It was a “space” in which information could exist.”

    This is continuation of my thinking from the time when we worked together on the Vvaleo Initiative with Dee Hock.

    Group at Initial Vvaleo meeting in Seattle

    I was pitching an idea called HealthSpace, a way of creating a “space for health information” akin to the way that Tim Berners-Lee created the Web as a “space within information could exist.”

    For example, a web user can drag a book’s URL from Amazon to Twitter, press send, and just assume that anyone, anywhere, and on any web-enabled device would have “interoperable” access to it.  We don’t need an interoperability agreement between Amazon and Twitter, and if I want to pass the information through Facebook or Gmail, that’s easily done.  I don’t have to re-engineer the whole system if I want to use a different routing, nor do I have to wait for some standards committee, government agency, or vendor to come up with the perfect standard for defining book information exchange.

    The web created a large-scale, fine-grained network that used surprisingly few “moving parts” to do an amazingly large amount of information processing.  I’d like to do the same for health care.  This would also solve many of the political problems facing VA-DoD sharing.  The same information could be shared as a “flat” information space, but different agencies could superimpose their hierarchies or constraints on it as they see fit.  The agencies are not giving away the “family jewels” but are rather being given greater control over their information.

    For example, blood pressure measurement may seem like a fairly benign piece of information.  It might come from a VA clinic, a WalMart convenience clinic, or a home smart phone gadget.  However, if it is a Navy Seal located in some remote mountain village, this puts the information in an entirely different context. The metadata about the blood pressure measurement – the time, location, etc. is hugely different than the WalMart reading on a Vet.

    The information space model would allow the Navy to place restrictions on this information – from compartmentalizing it entirely, to applying whatever protocol they choose for that class of information.

    After Tim Berners-Lee invented the web, he moved on to design the Semantic Web, which is now called Linked Data:

    Part of Tim’s design genius in creating the web was allowing it to be broken – the “404 not found error.”  Prior efforts (such as Doug Engelbart’s Hypertext system) required bidirectional referential integrity: If A pointed to B, then B must also point to A.  Of course, in the best of all worlds, this would be preferable.  But in the real world of a dynamic, constantly changing world wide web, the 404 error was a key design decision to allow robustness in the design of the web.

    As an aside, Tim played an interesting role in the creation of My Health eVet system.  In the very early days of the web (1996?) , I had arranged a meeting with Rob Kolodner, Clayton Curtis, and others from VA to meet with Tim, Peter Solovitz from MIT, and Zak Kohane from Harvard. Rob Kolodner credits this meeting as the initial stimulus for the Health eVet program.

    I think that your question about decoupling data from the organization is a very timely and important one – which could lead to a breakthrough in VA/DoD sharing efforts.  I would be delighted to help you explore the issue.

     

     

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  • feedwordpress 15:57:05 on 2013/08/25 Permalink
    Tags: ,   

    Open Letter to Rep. Mark Takano (D-Ca) 

    Congratulations on your next step in public service as a member of Congress representing the 41st district, and your membership on the House Veterans Affairs Committee.

    Takano-300x300

    Your district was the site of the first VA/DoD health IT sharing, a system that I helped develop in 1983-5 when I was a Computer Specialist at Loma Linda VA.  I worked closely with the committee and Chair Sonny Montgomery’s staff to demonstrate that the DoD could easily adopt the VA software, and we could communicate between Loma Linda and March Air Force Base.
    Tom Munnecke, Ingeborg Kuhn, George Boyden, Beth Teeple showing off the first VA/DoD Health IT interface

    This demonstration was studied by GAO, VA, DoD staff, the Veterans Affairs Committee, and other consultants.  Except for the DoD-hired consultant (who later told me that he had been hired “to make the system look bad, but when I saw it, it looked pretty good to me”) Here is 2011 conversation I had with Beth Teeple, who helped make it happen from the Air Force’s side.

    The committee noted that DoD had spent $250m (1980 dollars) to develop Initial Operating Capabilities (IOC’s) at a few sites as standalone demonstrations, while VA was spending $82m (1980 dollars) to deploy those capabilities in production across 172 hospitals.  None of the IOCs were compatible with each other, whereas the VA system (later to be called VistA) was developed around a sophisticated “active metadata” system with which all systems were able to communicate by virtue of their shared metadata approach.  It’s a bit like solving problems with algebra rather than arithmetic.  A single algebraic formula can simplify problems that would generate an enormous array of arithmetic efforts.  Algebra is a “meta” level way of looking at things.

    This sharing effort, by the way, was made possible by the committee’s VA/DoD Sharing legislation championed by Sonny Montgomery.  This allowed VA and DoD sites to share resources, and keep the cost savings at their local level, rather than returning the funds to headquarters.

    Sonny Montgomery wrote this 1984  letter to Secretary of Defense Casper Weinberger:

    Mr. Secretary, I cannot understand the DOD reluctance to try the VA system, which will provide on a timely basis the mandatory system compatibility between the two agencies.

    The success of this demonstration (and a parallel one between Fitzsimmons AMC and Denver VA), lead Congress to require that one of the competitors for the DoD’s Composite Health Care System (CHCS) bid a adapted VA system.  I left the VA in 1986 to work on the SAIC effort to propose the VA system.  We won the CHCS “fly off” competition with a bid about 60% of the competition.

    Unfortunately, the DoD dismantled the communications capabilities that would have allowed the graceful evolution of VA/DoD sharing (and the improved coordination of DoD facilities, as well).  They also took many steps to make the system incompatible with VA.  Whereas VA was thriving based on its “algebra” design ethos, the DoD continued its thrashing about, based on its “arithmetic” level of thinking.

    When I first saw the AHLTA architecture, my initial reaction was that it was a “giant single point of failure.”  A decade later, while Congress was holding a hearing called “AHLTA is Intolerable,” the system ironically went into a global failover mode; the central node had failed again.  AHLTA is a rich source of counterexamples on how not to develop systems, but one of the most significant is its over-centralized single point of failure architecture.  NASDAQ has a similar vulnerability: it suspended trading for three hours last week due to a failure at a single point.  All European Blackberry’s were locked out of email service for a week a while back, again to a failure at a critical point.  These systems were designed for efficiency, not resiliency.  The brittleness that was “baked in” to their design also manifests itself in their ability to adapt to changes or surges of activity.

    When I hear of a single, integrated electronic health record for the VA and DoD,  I see brittleness, not efficiency.  I see it devolving to the DoD’s lowest common denominator – based on DoD’s “arithmetic” approach rather than the VA’s “algebraic” model.

    The President’s Council of Advisors on Science and Technology (PCAST) issued a report calling for greater use of metadata – the algebraic model, which is a positive step forward to what has been a root cause of success for VistA over the years.  Unfortunately, I have seen these recommendations having much effect on the future health IT designs.

    I hope that you thrive in you service in Congress, and I hope that you can bring fresh insights to the never-ending problem of VA/DoD sharing.   I would be happy to provide any insights that may be helpful to you

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  • feedwordpress 18:20:04 on 2013/07/25 Permalink
    Tags: , , , ,   

    1993 GAO Report: Increased Information Sharing Could Improve Service… 

    Here’s an interesting link to a GAO report analysing VA’S DHCP (now called VistA), DoD’s CHCS system, and Indian Health Services’ RPMS systems.

    Seems that barriers to sharing were organizational issues, not technical.

    Not much has changed in the intervening 20 years, except that the systems have become 100x to 1000x more expensive (i.e. profitable to systems integrators who revel in the complexity of having lots of incompatible pieces).

    It’s like we are living in a time warp, doing the same thing, time after time, ignoring what has succeeded, and replicating what has failed.  And it just keeps getting more complicated.

    Someone should ask, “What’s the simplest thing we can do?” rather than continually shoot for gold-plated perfection.

     

    Tip of the Hat to Sam Habiel and Jim Garvie for digging this out…

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  • feedwordpress 03:33:39 on 2013/07/10 Permalink
    Tags:   

    Gone Sailing… 

    In case anyone is trying to reach me, I will be off the grid until July 20. If any one wants to reach me, ask NSA for their PRISM data about me.

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  • feedwordpress 15:22:23 on 2013/07/08 Permalink
    Tags: Ethos of VistA,   

    Hello NHS – Hope You Enjoy VistA 

    tom in london phone booth

    Hello National Health Service.  I’m glad that you are looking in to the adaptation of VA’s VistA into your IT activities over there.  I’ve been an outside observer and sometimes consultant to various NHS groups for years, and am particularly interested in helping you understand the VistA phenomenon.  Trying to understand VistA by looking at its source code is like trying to understand Wikipedia by studying the PHP of the underlying wiki.  The wealth is in the community of users, not the source code.

    By way of introduction, as a VA employee, I was one of the original software architects for VistA.  I then moved to Science Applications International Corporation (SAIC) in San Diego, Ca. where I played the same role for the US Dept. of Defense’s Composite Health Care System (CHCS).  These are the two largest health care systems in the US, so I’ve seen issues of scale, portability, bureaucratic infighting, and no end of technical argument about how to do things.  Internationally, I’ve designed or consulted on health IT in France, Spain, Switzerland, Finland, Japan, Australia, and Nigeria.  I’ve testified before the US Senate Committee on Veterans’ Affairs on the Future of Health IT.

    I spent some years looking at future technology for the VA (here are some of my papers), then took an early retirement from my position as VP and Chief Scientist at SAIC to broaden my interests of applying technology for humanitarian, philanthropic, and educational uses.  I took a year as a Visiting Scholar at Stanford University’s Digital Visions Program, founded a humanitarian think tank called the Uplift Academy, in which I’ve developed a workshop format I call Slow Conversations.

    I was one of the initial members and leaders of the Underground Railroad, the “skunkworks” group that did the original design of the system that was to become VistA.  I gave an Unlimited Free Passage certificate to Chuck Hagel, then of the VA, now US Secretary of Defense.   The Hardhats were another group, consisting of the programmers who were doing the actual implementation of the technology.  The Underground Railroad included a more eclectic group of people interested in the broader aspects of the issues of the role of Health IT in the VA.  Here are some videos of speeches at some Underground Railroad Banquets over the years.

    As Chief of Conceptual Integrity of the Underground Railroad, I took the the ethos we were building very seriously.  In addition to my programming interests, I was a keen student of linguistics, particular the Whorf/Sapir hypothesis, Ludwig Wittgenstein, and S.I. Hayakawa.  I was building a speech community to talk about health, across the organizational stovepipes so prominent in large bureaucracies.

    Some topics that might interest folks:

    Here is my presentation to the US Senate Veterans Affairs Committee on the Future of Health IT.

    I talk a bit about the VistA Ethos in this conversation with Ward Cunningham, inventor of the Wiki.

    A conversation with Philip Longman, author of Best Care Anywhere, documenting the VA’s dramatic transformation, in part triggered by the introduction of VistA.

    An interview with Ross Fletcher, MD, Chief of Staff of the Washington VA Medical Center, discussing how VistA represents a new health care model.

    I’ve started the New Health Project to look at the broader implications of health care and information technology.  We’ve had two workshops in California, and one at the W3C offices at MIT. Speakers have included Sci Fi writer/futurist David Brin, Sci Fi writer Vernor Vinge, who coined the term “Technological Singularity,”  Peter Norvig, Director of Research at Google, and others.

    I would be very interested in helping NHS understand the VistA Ethos, as well as establish a bridge between US and NHS to continue the conversation.

    P.S. The world of VistA as seen within Washington DC beltway is radically different from what happens in the field.  DC operates from a top-down “power” model, while VistA thrived as a bottom-up “energy” model.  So, while I’m sure that there is lots of value to power-based London/Washington connections, the real value to accrue would come from connecting a broader group of the folks who are actually using the software.

    I would be happy to help communicate and hopefully, enhance, the VistA ethos.

     

     

     

     

     

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