Dr. Seidman started his Health 2.0 Show webinar with a similar comment to his other addresses to eHealth groups, “it is not about technology but about transforming healthcare.”  He is right, and this is the heart of the meaningful use discussion.  It is also a perspective that should inform our reaction to the letter to CMS from earlier this week.  Slowing things down until 2017 or speeding them up will not matter unless we are approaching the problem in the right way.  With over $200M in beacon grants announced this week, we must ask ourselves:

Are EHRs a data-source or a presentation layer? If we are simply replicating paper-based medical documents in electronic form, are we really advancing the state of the art?  What parts of these data challenges should be handled in federal rules and which parts should be tackled by new open standards to re-architect the very plumbing of the Internet?

CLOUD is a non-profit technology standards consortia advocating, promoting and developing a language for people on the Internet.  This language, like HTML, is not focused on any particular domain, health or otherwise.  As a result, we are not advocating a specific approach to EHRs or final rules from ONC at HHS.  A thorough background on CLOUD’s impact and perspective can be found in Gary Thompson’s comment at the FACA blog on “Creating a Vision for Engaging Patients and Families Through the Meaningful Use of Health IT.” Since there is some concern that CLOUD’s post to the FACA blog is “advocating a product,” it is also posted here in the CLOUD Health section of our site.  As I mentioned to Dr. Seidman via an email exchange, CLOUD is not advocating a product but instead pushing forward a paradigm change and one that is vital.  We are not seeking permission for this new approach but actively engaging appropriate communities from health to finance to education and beyond to ensure that this new approach meets the needs of individuals and in the case of health, this individual could be a patient, physician or other healthcare provider.

The bottomline is that by 2014 it is highly likely that CLOUD’s contextual markup language (CTML) will be in either active use or aggressive adoption and as a result, it will have significant implications for the way in which our information is used and how that information is made both more private and more secure throughout the Internet.  CLOUD will be posting 4 web vignettes shortly to the What is CLOUD? section of its site that walks through CLOUD’s view of the Internet, the idea of ME 1.0 as opposed to Web 2.0, the power of Who I Am, and the impact of separating Who I Am from What I Am to make privacy and security a part of the architecture of the Internet.

As I listen to today’s discussion, I can’t help be struck by a key assumption in the discussion of an EHR.  This assumption is that an electronic health record is simply a digital version of the previously created paper versions of the same record.  This discussion is not dissimilar to the debate several years ago at the Securities and Exchange Commission as they moved to mandate XBRL (eXtensible Business Reporting Language) for the reporting of financial data by public companies in the United States.  XBRL represents a move towards a data-centric model from a document-centric one in financial reporting, and this type of thinking is a vital one in our ongoing health debate.  The EHR in many ways is simply a “container” by which to view health information.  If a clinical trial investigator were looking at the same information, their “container” for viewing the information might be entirely different.  Architecting around the data, rather than the document, is a vital step.  Ensuring that data is also architected around the individual is equally vital.

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Unfortunately, watching Roni Zeigler show off Google Health, it is clear that there is not even a real data utility layer for health.  This is not to say that Google Health is not breaking important new ground, but the idea that I have to import information from the Cleveland Clinic or any other source is what gives me that feeling of deja vu.  For all the prowess of Google, this is just a Web 2.0 version of the old EDI approach to moving information.  Once I click that import button, I now have data in two places, Google Health and the Cleveland Clinic.  Once data is replicated, new challenges develop around which data source is authoritative, and the data runs the risk of being out of sync.

So as not to simply target Google’s approach, it is equally clear that Microsoft has the same perspective.  Their announcement with Siemens is an excellent accomplishment, however, as I just tweeted from @ANewCLOUD and @CLOUDHealth, “Can the PHR be a ‘platform’ like the Internet when Microsoft & Google announce partners/customers? I don’t license the Internet.”

At an intuitive level, a true date utility layer for the Internet can not just exist within one domain.  If it did, it would be like having different flavors of HTML for finance, education, government or health. As we all know, HTML is a presentation layer that like the printing press can print whatever “words” we feed into it.  We don’t have different printing presses for different topics, and so, we can’t have a separate data utility layer for different topics, either.

The ultimate implications of a true data utility layer in health (or any domain) means that any player in the value chain: doctor, payor, patient or any one else, does not need to know if your PHR is in Google Health or Microsoft HealthVault.  Like HTML, I can view a web page in Internet Explorer, Safari, Firefox or Opera, and I do not need to know how the website I am visiting was created.  Until we reach this same point with a data utility layer for the Internet, we will remain trapped in the world of EDI and keep have a strong sense of deja vu.

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One of the questions that was raised by the moderators and by the audience is can these communities translate across geographies?  This question was not raised in the context of language translation but instead from the perspective of broader community engagement.  That same question was also tweeted by @andrewspong in the context of the intersection of these communities between physicians and patients.  That tweet is an excellent one and got me to thinking about how a CLOUD-enabled Internet might change some of the context around how communities are formed and engaged.As CLOUD points out on its welcome page, part of the challenge for any of these patient or physician communities or for that matter, Facebook, or any community site is the fact that the Internet has been segregated by web pages.  The Internet at its core is a large global community.  It is only when you engage the power of HTML for its wonderful presentation capacity that you begin to create silos and separation.  On that note, the Health 2.0 moderator just asked the question of how many online communities doctors will join.  47% of the audience thinks doctors will only join two sites or communities, and one of the panelists commented that doctors want to keep their Facebook and professional lives very separate.  But from a CLOUD perspective, we don’t think one should have to choose.

On my personal blog at The End of Linearity, I point out that “there is no there on the Internet.”  This is a fundamental shift in thinking.  One of the biggest challenges for a Facebook or PatientsLikeMe is the fact that they spend large amounts of time aggregating users at their sites or destinations.  If I’m at Facebook, then I’m not at PatientsLikeMe and vice versa.  At a certain point, users are only going to engage so many communities, so what if that one “patient like me” doesn’t end up at PatientsLikeMe?  What if instead, PatientsLikeMe was a viewer of connections on the Internet and not a destination?  What if Medting didn’t need to aggregate doctors at all but could focus all of their energy on tools, resources and services rather than attracting doctors?  What if patients with a certain disease could bring together in one viewer (notice I didn’t say website) the great content from the first panel at Health 2.0, fellow patients from the second panel and appropriate physicians from anywhere in the world from the third panel?

For this to happen, the Internet must not only move away from its web-centric view of the past fifteen years, but it also must move away from concepts of identity like OpenID that simply makes it easier to log in to these same websites.  We need to move towards a context-centric view of the Internet and bring together people not webpages.  By making it about WHO I Am™, then wherever I am on the Internet, I can be everywhere I need to be.

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With the program commencing at 1pm today, I decided to join my wife on a walk of the Seine this morning and a visit to the Musée d’Orsay.  With a limited time at the Musée d’Orsay, I felt compelled to visit the impressionist and postimpressionist works.  They are my favorites.  As we looked at some Monets, I noticed something very intriguing about each of his works and for that matter all of the painted works in the Orsay’s collection. As important as the works themselves, it was equally important to the artist to put their WHO and WHEN tag on their works.   Monet and others not only signed their names to their art but also indicated the date of their painting.  Of course, Monet’s painting of the Arguenteil Bridge or the Houses of Parliament tells you WHERE it is by the subject matter of his painting.

What does Monet have to do with the Internet, though.  In today’s world of the Internet, we have a new canvas on which to paint our works of art.  Unlike Monet, we do not need to be skilled with a brush, colors and a sense of how to combine them to use the Internet.  We do, however, still use tags like Monet.  When we are on Facebook, we tag WHO we are to connect with our friends.  When we are on Flickr, we tag WHERE we are by sharing photos of our experiences and WHEN they were taken.  This whole notion of WHO I Am™, WHEN I Am™ and WHERE I Am™ is part of our DNA, and CLOUD intends to bring this language for people on the Internet to life.

Of course WHERE I Am matters, and in order to connect with leading European artists in Health 2.0, I have come to Paris.  By being in Paris at the Cité Internationale Universitaire, I can not only see great art from the past but also see the great art of the future.

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There is no “there there on the Internet”. This simple thought is an important point by which to consider some recent innovative thinking going on on opposite sides of the globe.

There are two videos worth watching by which to understand online identity and its implications in finance. The first video is from Dazza Greenwood, MIT Media Lab eCommerce guru. This video captures the exploding issue of online identity and the idea that it is captured in a variety of silos, from MySpace to eGovernment.

The second video is about eMe, an idea that captured the interest of Sibos 2009 attendees and Guy Kawaski, entrepreneur and evangelist. This is a novel concept to make the individual the center of their financial universe with a sort of digital safety deposit box.

However, there is an even broader set of implications that flow from these two snippets and from Joy Babu’s question in this discussion on a centralized repository of online medical records. And this larger implication is framed by the reality that “there is no there there on the Internet.” Both eMe and online identity concepts, like OpenID, continue to be conceived within the idea that there are destinations in the Internet world, like there are in the real world. However, in the virtual world, I can be everywhere, anywhere and nowhere all at the same time.

Thus, for eMe to be truly revolutionary it can not exist simply in my financial silo. Data standards, like HL7 (Health Level Seven) or CDISC (Clinical Data Interchange Standard), in healthcare make sense in a data silo. SIF (Student Interchange Framework) in education also makes sense in a data silo. But, as immunizations make clear, is this data record a health domain issue or an education one? Or does it matter? Could a change in focus to the individual create the new locus of the Internet? Could a ME 1.0 revolution return us to the roots of the Internet and liberate us from the destination metaphor of web pages? Why put this data in two places, when it already exists in one?

CLOUD (the Consortium for Local Ownership and Use of Data),Inc. believes a new era is at hand, and that XBRL in healthcare, eMe in finance and online identity questions from MIT are part of a broader revolution. It is the perspective of CLOUD, that with standards in education, healthcare, finance and beyond, the only unifying place in the value chain for a new standard is the individual, a ME 1.0. Rather than trying to rationalize data standards from various silos, a ME 1.0 approach ensures that all of an individual’s domains are brought together at the one point of singularity on the Internet, people. CLOUD is on this path to make the Internet about people, rather than just web pages.

As CLOUD builds a new contextual markup language (CTML, rather than HTML), it will also be outlining an appropriate metamodel and syntax for the various dialects (education, healthcare, finance), supplementing data standards, rather than replacing them, as Paul Wilkinson notes in his post to this discussion. Unlike Google Health or other approaches to this problem in healthcare, CLOUD does not envision simply creating yet one more digital filing cabinet for our information. CLOUD sees identity as a fabric issue, rather than a destination one, meaning that the various parts of ME can stay where they are, but with ME in control and at the center.

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CLOUD could not agree more with Tim and were thrilled to take part in a dialogue on this topic with frog design yesterday in a Twitter forum on #futureofhealthcare.  Transcript will be posted here soon.  The frog design sponsored forum was on their recent article, “Is the Future of Healthcare Social?” in Fast Company.

Not only is Tim right that the EMR of the future must be controlled by people but that design principle must be carried beyond the narrow silos of healthcare, education, financial services.  If we truly design around people, then it is not just a healthcare issue, it is about completely reinventing the Internet around people and not web pages.

Immunizations are an excellent example of data from the health domain that is needed by our schools at the start of every school year.  CLOUD’s concept piece on the topic of immunizations, found here, reviews this design problem from the perspective of the dreaded clipboard and the intersection between healthcare and education from the point of view of ME, the individual.

At the end of the day, it is about the “Power of People.  Connected.”  CLOUD applauds Tim and IDEO for pushing forward an important debate.

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The aggregation theme evolved quickly and was the title of one of the morning’s panels.  From my perspective, the notion of aggregation falls into three big buckets:  aggregation of content, aggregation of patients and aggregations of physicians/provider.  The aggregation of content play is lead by HealthCentral and WebMD, and in both cases, the eyeballs on the content drive the ad dollars.  The aggregation of patients is a bit more intriguing. It is led by Google Health, but as Microsoft HealthVault’s General Manager made clear in the consumer aggregation panel, they are a platform and not an aggregator.  If that is the case, then, in my humble opinion, why is it called a Vault!?  The last spot in the aggregation game is providers, which in some cases is for communities and in others, for delivery of online service, like American Well.

So, the idea of interoperability first laid down by HealthVault was expanded significantly in a Health 2.0 Tools panel that started with MediKeeper and change:healthcare, migrated to interactions of records and EHRs with Sage and Kryptiq and moved to the very real issue of drug interaction issues with Polka and PharmaSURVEYOR.

From a CLOUD perspective, this idea of aggregation and interoperability seem to be in tension, both conceptually and in the business models.  And, if the aggregation remains at the website level, the cost of interoperability will simply be too high.  My worry is that the wonderful innovations I saw today and yesterday won’t be fully maximized unless I can put the best of them together for my purposes.  The race for Web real estate has been tried before, and it failed back in the dot com bust in the early days of Web 1.0.

The only place in which aggregation and interoperability truly meet in an unrestricted way is at ME, the individual, the consumer, the patient.  Rather than putting fancy front-ends on a systemic problem, the Internet must be reinvented from the inside out.  Nowhere is this more clear than healthcare, and in the case of the health system and its users, it really is a matter of life and death.

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Much like HL7 and CDISC have only 15% adoption due to privacy concerns, these topics, payments especially, appear to be the elephants in the room at Health 2.0.

There is lots of innovation at various points in the system from American Well to Practice Fusion to YourNurseIsOn, but all of these exist in the current plane of competition (Innovator’s Prescription, Clayton Christiansen). Without reorienting the system from the user, ME, out, we’ll be putting fancy Internet and Web interfaces on top of the problem but not fix it. A CLOUD-enabled world means to change that plane of competition, so all these innovators have a new standard to work with that actually solves the problem.

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Places of the Soul, by Christopher Day, makes the point that architecture must begin based on where the designed structure is to be placed.  As he notes in the book, studies have shown that there is strong correlation between recovery time at the hospital and patient view, with every leaf being ‘worth its weight in gold.’  Design matters.  The Health 2.0 team has architected an excellent agenda that looks at the design issue of the healthcare system from the perspective of the patient.  I am excited to be attending and look forward to the possibility of CLOUD presenting its new vision and language during the Human Centered Design Contest.

CLOUD believes that the Internet needs a new design, too, an architecture based on starting from a new place, the individual.  ME 1.0 looks forward to meeting Health 2.0 and engaging in a new blueprint for the future!

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The quest for the holy grail of the electronic health record is particularly difficult because of fundamental disagreements about matters as general as the scope of the “health” domain. What are the proper relationships between records made by examining physicians, diagnostic experts, health insurance companies, parties paying for health insurance, patients themselves, and others? What about schools that require particular vaccination records or physical examinations for athletic participation? Or financial service providers pricing annuities based on actuarial estimates?

This piece by Tevi Troy at the Washington Post highlights key issues that CLOUD can help address as we seek to solve this electronic health record challenge through new vectors and a change in your horizon.

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