This post originally appeared at the Federal Advisory Committee Blog, "Creating a Vision for Engaging Patients and Families Through the Meaningful Use Of Health IT."  In respect to concern over its "advocacy," the full content has been moved here with more general comments substituted at the FACA blog.

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.