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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Over the past several months, I’ve had the pleasure of attending a number of intriguing conferences on the issue of healthcare.  From Health 2.0 in San Francisco last October and the same event in Paris in early April to the eHealth Initiative program where Dr. Seidman spoke in late January, every event at some point has touched on the elephant in the room, meaningful use and by extension, the EHR.  With the very astute minds at ONC and HITPC, I am not going to argue that a particular direction be pursued or attempt to answer particular questions from the panels on the subject of meaningful use but instead lay out some completely new ideas.

WHY CLOUD, INC.

A year ago I founded CLOUD, Inc. for two reasons.  The first was because Facebook in March 2009 had raised the issue of privacy and ownership with a change in their terms of service.  With so many privacy issues over the last year with Facebook, it is important to note that this particular firestorm was unleashed when they changed their terms of service to say that even if you delete your account, we own your profile.  People realized that this notion of ownership on the Web was not just troublesome with Facebook, but with all their data.  The second reason for founding CLOUD was far more personal.  My wife and I were driving from Austin to Houston to visit the MD Anderson Cancer Center in Houston with a very fancy PET/CT scan of her tumor on a DVD.  Having been involved in technology for a long time, I said that there has to be another way to move data around in healthcare.  In the words of ePatient Dave from the eHI event in January, it was my “now I care” moment.

INFORMATION ABOUT CLOUD, INC.

CLOUD is the Consortium for the Local Ownership and Use of Data.  To understand the goals of the Consortium for Local Ownership and Use of Data and its potential impact on EHRs, PHRs and beyond, we need to look under the hood of the Internet.  The Internet isn’t working at its full potential. Some might even say the Internet is broken.  40 years ago, when Vint Cerf and Bob Kahn developed TCP/IP — the open standard that is the basic plumbing for today’s Internet — their goal was to connect people and networks. Make no mistake: That’s been an enormous success.

A little more than 15 years ago, there was another breakthrough — an open standard for text on the Internet called HTML. And HTML is a big success too. It revolutionized free speech and brought billions to the Internet. However, HTML’s revolutionary success has led to an unfortunate side effect. What’s the problem? Well, HTML has been so successful that it’s spawned confusion between exactly what the Internet is and what the Web is. And that’s a fundamental fact to grasp if you want to understand CLOUD: The Internet and the Web are not the same things. As wonderful as it is, remember: the Web is just one window through which you can see the Internet’s connections.

This is perhaps today’s biggest challenge in the entire field of human communications: the same technology that creates windows into the Internet; the same technology that empowers us to communicate visually via Web pages and related tools; this technology also creates window frames and walls that separate us. The problem is, what I enter in one web site isn’t visible anywhere else. My personal information is replicated in dozens, if not hundreds of different websites. That made sense when primitive Internet tools didn’t give us any alternatives about how to control our personal information. But those days are long gone. Today, the technology exists to empower people to control how anyone else might see, use, or republish our personal information. What’s needed is an open standard building on TCP/IP, HTML, and a variety of other standards to make our vision — local ownership and use of data — a reality for the 21st century.

INFORMATION ABOUT CLOUD HEALTH

This is why CLOUD believes that the next revolution of the Internet is not Web 3.0 or Web 4.0 but instead ME 1.0.  CLOUD’s new language for people is being designed to make the Internet about connections — not walls.  To get a quick glimpse of how this type of thinking impacts the PHR versus PHR conversation, these two posts from www.cloudinc.org are useful and point out why an “interop model” that is limited to healthcare, while intriguing, doesn’t go far enough:

Health 2.0 Europe:  A Personal Health Record (PHR) by Any Other Name…

Digital Debacle for EHRs in Britain: The Challenge of Using 19th Century Thinking to Solve 21st Century Problems

As I also commented on David Kibbe’s post at The Health Care Blog, “EHRs for a Small Planet,” earlier this year, resolving the data silo problem by focusing on the data in the silos will simply perpetuate the EHR problem. Moving data from analog (i.e. paper) filing cabinets to digital filing cabinets simply relocates the problem. Securing user data scattered among countless web silos is complex and consumes huge amounts of time. New identity standards or fancy new EHRs, alone, aren’t going to fix things.

A full paradigm shift is needed, a shift that focuses on patients in health care — and on people in every domain in which making data more useful can improve outcomes.”  ’Exporting data’ or moving information from one record to another is a 19th century view of information.  The Internet liberates us from the constraints of documents, records or paper.  Similar to XBRL in the financial space and the mandate for its use by the Securities and Exchange Commission, we need to shift to a data-centric, rather than document-centric view of medical information… or any information for that matter.

CLOUD’s emerging technology standard is that shift, because as ePatient Dave knows, this is a people issue and not just a data issue.  The challenge goes far beyond identity, to empower Internet users to control precisely how their information is used. Think of CLOUD’s evolving standards as privacy and authenticity standards that work — not a confusing Web-based control panel, but standards to let anyone — user or service provider — develop tools that are simultaneously more sophisticated and easier to use. Doing this requires a shift in thinking equivalent to what HTML brought to the Internet 15 years ago: this time, though it is a mark-up language not for text, but for people. It’s a mark-up language that supports Internet connections that transcend the browser paradigm that’s consumed us since the 90s and thus breaks us free of the challenges of data silos in the medical domain.

CLOUD believes the keys to adoption are, one, Local Ownership and Use of Data — hence the name of our Consortium. Two: to break down health, finance, education, and other silos to simply connect people, not industries. Just as people use one main standard to connect text on the Internet, we should use one main standard to connect with each other on the Internet. And three: empowering people to separate their identity from their data in every silo. Thus, privacy is ensured and the economic value of connections among people and their data grows. It’s ME 1.0, not just Web 2.0.

The following white papers show how this new approach not only improves things within health care (using clinical trials as an example):

A New Contextual Language to Improve Treatment and Prevention of Disease

but across domains (using immunizations as an example):

A New Contextual Language to Improve Usefulness of Immunization and Vaccination Records

The immunization white paper makes clear that the issue we are addressing with meaningful use is not just a health record issue.  For anyone with children, the immunization card that we take to school each year for registration is a clear sign of the cross-domain nature of information.  As the white paper highlights, should we track immunizations in health databases or school databases?  Or is that the wrong question?  Right now, we are duplicating the information in both, and that is definitely not the right answer.

CONCLUSION

We hope that individuals and the industry will engage with CLOUD in this transformation of the Internet.  The new foundation and open standards we seek to build should open a whole new world of tools and resources to address EHRs, meaningful use and a host of other goals for information and improved healthcare.

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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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The following quote is at the very heart of the privacy issue:

The “summary” records contain basic medical information including illnesses, vaccination history, and could include medication patients have been given. Ages and addresses are also included. (emphasis added)

The issue with privacy on the Internet today is that the data silos into which our records are poured not only include What I Am™ but Who I Am™.  The combination of critical health information, in this case, along with personally identifying information is at the heart of the privacy issue.  If one can separate Who I Am™ from What I Am™, then the privacy issue begins to change, since the NHS database may have the What, but it won’t have the Who.  The patient, along with their doctor, are in charge of connecting Who to What.  No opting out… simply better control… and putting the ownership of the data into its rightful place, the individual.

Approaches, like OpenID, regretfully, are only a part of the solution to this EHR ownership issue. By facilitating “logging in” to web pages and making it  possible to more quickly take all of my information and put it into yet another web and data silo, they don’t change the privacy problem.  They accelerate it.  Their home page states this very clearly, “Log into 50,000 websites with a single username.” Even the OpenID Foundation accepts the world of web sites as a given: “OpenID is a safe, faster and easier way to log into websites.”  OpenID’s challenge is that it accepts the browser and web paradigm of the past 15 years and does not go to the heart of the Internet that was ushered in by Vint Cerf and Bob Kahn 40 years ago.

Katherine Murphy, of the Patients Association, quoted in the article, says it best: “The Health Service should not put in place bureaucratic obstacles to patient choice because they are worried about what patients might choose to do.”

CLOUD seeks to fix a broken Internet, so that patients can have that choice.

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However, talking about technology and transforming an enterprise through the use of technology are two different things. eHealth Initiative is one organization, like Health 2.0 and many others, that are providing important forums for evolving discussions on this vital topic.  Aneesh Chopra, CTO of the United States, gave the opening keynote at both the Health 2.0 conference in San Francisco this fall and at eHI’s 2010 Annual Conference, occurring now in Washington, DC.  His enthusiasm for the potential of technology was unmuted at both events.  And, of course, in the months between October and January, the initial suite of proposed standards for meaningful use have been promulgated.

Perhaps most striking about the new proposed final rule on “electronic” health records is the myriad of regular mail, overnight mail and courier instructions preceding the actual proposed rule, a rule that seeks to outline the exchange of electronic information!  We dealt with some similar foundational issues in Texas, back in 2000, when as a Governor’s appointee to our eGovernment Task Force, we had to make recommendations to our legislature regarding changes to Texas statute to allow electronic signatures and change the method for verifying certain supporting documentation.  Without these changes, all of our exciting new online activity, from driver licenses to vehicle registration to professional licenses, would be for naught, because once the new online form was complete, the user would still be required to print the form to provide their physical signature, defeating the point of eGovernment.

This is ultimately the point of transformation.  Simply applying technology to existing processes provides an ability to “substitute” new tools for old ones.  ”Augmentation” and “redefinition” come when you rethink processes based on the changed landscape of technology.  That is the ultimate challenge of Health IT, not to simply change chisel and stone to iPhones, but to revision the whole process.

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Many are debating whether 2000 pages is too long… CLOUD asks if it is too few…

With 300 million Americans, let’s assume that each of us visits the doctor or some other healthcare provider once.  Those visits would yield 300 million pages of documentation for the visit, and of course, at least another 300 million pages of insurance information.  So, that’s 600 million pages… Then let’s assume that 5% of these visits yield a prescription or some further testing, that’s another 15 million pages, with the corresponding 15 million pages of insurance information.  We’re already at 630 million pages…

Thus, the question in the title to this post comes front and center.  Is it possible in 2000 pages to capture all of the nuances of the billions and trillions of decisions that doctors, patients and others in the healthcare system make on an annual basis?  CLOUD is not a political organization, so we do not take a position on the pros or cons of any of the legislation currently pending.  We do, however, believe that by creating a personal mark-up language to give people control over the use of their personal information, the billions and trillions of pieces of data that move around in our healthcare system can yield more friction-less results and better outcomes at lower cost, with privacy that is ensured, rather than just promised.

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SC Magazine | Chuck Miller | October 1, 2009

Last year’s data breach of St. Louis-based Express Scripts may be more serious than initially believed.

In November 2008, the major pharmacy benefit management firm said it received an anonymous letter that included the names, Social Security numbers, birth dates and, in some cases, prescription information of 75 members. The writer or writers threatened to release millions of more records if the business failed to pay an unspecified sum of money.

In the last two months, based on new information from the extortionists, Express Scripts began notifying more than 700,000 victims of their personal information may have been compromised.

CLOUD Take: It is interesting that a data breach that affected 700,000 people is perceived as a breach of Express Scripts.  Although the point of loss may have been systems at Express Scripts, there were 700,000 breaches, not one.Privacy and security are inextricably linked, and it is CLOUD’s Take that as long as information about “who I am” exists in the same databases as information about “what I am” the problem will continue.  Crafting a new language for the Internet that allows these to be separated will help both individuals and organizations, like Express Scripts.

After initially notifying only the 75 victims from last year, the company in August was told by the FBI that “…the perpetrator of the earlier action had recently forwarded a letter and data file to a law firm,” according to the company’s website.

Maria Palumbo, spokeswoman for Express Scripts, would not elaborate on the contents of the letter.

“The FBI is conducting the investigation that was opened last fall,” she told SCMagazineUS.com Thursday. “It is still ongoing.”

The website points out, however, that FBI special agents contacted Express Scripts immediately, and the news was not good.

“The data shows that the extortionist possesses additional member records from the same period of time as those identified in the 2008 extortion attempt,” according to the website. “Express Scripts is in the process of notifying these members.”

According to Palumbo, most of the 700,000 notifications were sent as a result of the August FBI action.

The data thieves still threaten to expose the Social Security numbers, addresses, birth dates and prescription information of millions of patients of the pharmacy benefit management firm unless the company pays an undisclosed sum in extortion money. The company has offered a $1 million reward for information leading to the arrest and conviction of the extortionists.

CLOUD Take: The $1M reward is a visible sign of the cost of this problem and likely doesn’t include the cost to the 700,000 individuals.  Although Express Scripts may be at the point of this needle, it is CLOUD’s perspective that it is the “data silo” problem and lack of other solutions that are the bigger problem. We wish Express Scripts the best of luck in its work with the FBI and its members to bring this situation to a successful conclusion.

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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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