CLOUD: Consortium for Local Ownership and Use of Data, Inc.

Consortium for Local Ownership and Use of Data, Inc.
The Power of People. Connected.

Patients:

Won't CLOUD mean I have to visit more Web sites?

No. CLOUD is about connecting people to people, not people to Web sites. Whether you connect via a Web browser, software like Excel or iTunes, a telephone call with a live human being, or some new interface, CLOUD is designed to let you spend less time "on the Internet" and more time on personal communications.

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CLOUD Health

The power of CLOUD comes not only from its ability to bring together ME across your various life domains from health to education to finance and beyond but its ability to put you back in the center of your health decisions. In the midst of the national debate over healthcare, we can not lose sight of the fact that health is about you. ME 1.0 can help both you and the healthcare system achieve that goal.

Health 2.0 Show: Joshua Seidman, ONC on “Meaningful Use”

May 5

Posted by Gary in CLOUD Health | No Comments

Earlier this week, 51 healthcare groups wrote to the Centers for Medicare and Medicaid Services asking for the current federal EHR adoption goals to be done “in a manner that will remove barriers to and promote the widespread adoption of health information technology.” This letter, sent on May 3, is an interesting backdrop for Wil Yu and Joshua Seidman’s participation in the Health 2.0 Show’s webinar on meaningful use today. It appears from the letter to CMS that the concern is not simply the adoption rules for EHRs but how these groups’ advanced HIT systems might or might not meet those requirements by 2011 and most importantly whether hospitals are eligible for the associated incentives.  (The debate over ‘pushing’ adoption through institutions, as opposed to ‘pulling’ adoption through patient-centered approaches will be taken up in another post.)

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.   Read the rest of this entry »

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CLOUD’s Input on Meaningful Use at FACA Blog

May 5

Posted by Gary in CLOUD Health | 1 Comment

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. Read the rest of this entry »

Health 2.0 Europe: A Personal Health Record (PHR) By Another Name…

Apr 7

Posted by Gary in CLOUD Health | 3 Comments

As I sit here at the start of Day 2 at Health 2.0 Europe, I can’t help having a sense of deja vu.  Not just the deja vu that comes from being at a previous Health 2.0 conference in San Francisco, but the deja vu that comes from the feeling that the field of Health 2.0, not the conference, is just passing the old threshold of electronic data interchange (EDI).  As Matthew Holt set the stage for this portion of the Health 2.0 Tools session, he commented that “it is becoming a data utility layer rather than a personal health record.”

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.   Read the rest of this entry »

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Health 2.0 Europe: Do We Need an EU for Online Communities?

Apr 6

Posted by Gary in CLOUD Health | 4 Comments

Over the past two hours at Health 2.0 in Paris, the attendees of this excellent conference (almost 500 folks) have been treated to a large variety of both online patient and physician communities from both Europe and the United States.  From PatientsLikeMe to IWantGreatCare to Imedo, we’ve seen excellent examples of web communities from the US, UK and Germany.  On the physician side, we’ve been treated to resources like santé log in France, Sermo in the US, and Medting in Spain.

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. Read the rest of this entry »

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Health 2.0 Europe: Tagging… From Monet to the Internet

Apr 6

Posted by Gary in CLOUD Health | No Comments

It is such a joy to be in Paris in the springtime!  The weather here is almost as beautiful as the weather at Health 2.0 in San Francisco last October.  The air is fresh, the flowers are blooming, and speakers from over 13 countries will be presenting at Health 2.0 in Paris.  The program is being hosted at the Cité Internationale Universitaire of Paris.

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.   Read the rest of this entry »

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

Mar 15

Posted by Gary in CLOUD Health | 1 Comment

Last week’s Daily Telegraph in the UK reveals the challenges we will face with EHRs in the United States if we do not change our perspective on the solution before cementing 19th century approaches into rules at HHS. “Patient’s Medical Records Go Online Without Consent,” by Kate Develin does an excellent job of looking at the implications of seeing this as a records problem rather than a patients problem.  EHRs divorced from the patients to whom they belong is at the heart of the digital debacle in Britain.

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 Read the rest of this entry »

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eHealth Initiative: Health IT’s Role in Care and Reform

Jan 26

Posted by Gary in CLOUD Health | 1 Comment

In a world where many of us as consumers are accustomed to accessing their bank accounts online, checking their location on a GPS or smartphone and booking travel online, it is not surprising that 57% expect their physicians to use electronic health records — EHRs.  This statistic, from John Rother of AARP, seems appropriate in a world of advanced technology.  Actually, one might expect this number to be higher.  What is surprising is that 83% of physicians do not use HIT in their practices to support technology-enabled changes to the supply chain of information.

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!   Read the rest of this entry »

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2000 Pages: Too Many or Too Few? (Update)

Dec 1

Posted by Gary in CLOUD Health | 1 Comment

On October 29, 2009, the Speaker of the House of the 1st Session of the 111th Congress revealed the results of a tangled legislative process and unveiled a bill “to provide affordable, quality health care for all Americans and reduce the growth in health care spending, and for other purposes.”  That legislation is now being taken up actively by the U.S. Senate.

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

Read the rest of this entry »

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Express Scripts data breach: Isolated Incident or Endemic Problem?

Oct 19

Posted by Gary in CLOUD Health | 2 Comments

Express Scripts data breach may have hit 700,000 victims

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. Read the rest of this entry »

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XBRL: Can It Make a Difference in the World of Healthcare?

Oct 12

Posted by Gary in CLOUD Health | 3 Comments

I just made the following post to the XBRL Matters LinkedIn group, which has a discussion thread on the impact of XBRL (successfully promulgated and mandated by the SEC) in healthcare.  I post it here to share with the broader CLOUD Health community:

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. Read the rest of this entry »

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