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Untangling the electronic health date exchange

The purpose of this post is to help a non-technical audience untangle some of the confusion regarding health data exchange standards, and particularly come to a better understanding of the similarities and  differences between the Continuity of Care Record (CCR) standard and the CDA Continuity of Care Document
(CCD). But what I’m most interested in is getting beyond the technical, political, or economic positions and interests of the proponents of any particular standard to arrive at some principles that demonstrate in plain language what we are trying to achieve by using such standards in the first place.

Frankly, I don’t give a hoot about what standardized XML format for
capturing clinical data and information about a person becomes the norm
in the health care industry over the next several years. I do care
that the decision is made by the people, institutions, and companies
who use the standards, and not made by a quasi-governmental panel or a
group of "industry experts" whose economic or political interests are
served by the outcome, and dominated by a particular standards
development organization with whom they are very cozy. 

In other words,
I do want free and open market forces to be able to operate freely and
openly as health information exchange evolves, in part because I
believe market forces will work in the direction of continuously
improving health IT, whereas in my experience top-down efforts are
often protective of established interests and discouraging to
innovation.

Editor’s note: When republishing Kibbe’s post today, we accidentally deleted the great conversation going on in the comments section. If your comment was deleted, we encourage you to submit again.

Herein lies the problem, in my opinion, with the standards adoption
process that the Office of the National Coordinator of HIT (ONC) and HITSP have overseen during the past four years.
It is the epitome of a top-down, large established player-controlled,
and anti-competitive juggernaut in which a "one size fits all" paradigm
has been promoted and lobbied for. In this case, HITSP has "selected"
the CCD and not the CCR standard, despite the market forces that seem
to be continuing the use of the CCR standard. This is simply stupid
and likely will turn out to be futile.

I am one of the many volunteer co-developers of the Continuity of Care Record standard, which has been developed under the auspices of ASTM International,
a not-for-profit organization that develops standards for many
industries, including avionics, petroleum, and air and water quality.
The CCR is sponsored by the American Academy of Family Physicians and
numerous other physician groups.  I am also the 2008-2010 chair of the
E31 Technical Committee on Healthcare Informatics, the leadership group
within ASTM that is working with Google Health and many other
individuals and organizations on the implementation and use of the CCR
standard in this country and abroad.  There are people who will claim that I am a
partisan in a battle with a competing standards development
organization, known as HL7, which has indeed developed a completely
separate standard known as the Continuity of Care Document
that utilizes the CCR standard. These folks will tell you that this
is a classic competition between standards, a Sony versus Betamax
situation, and that only one of these standards can survive in the
current environment. Some would even like to use the giants Google and
Microsoft to set the stage for such a competition.   

Honestly, I think that’s all baloney. It makes for good drama, but it
doesn’t get close to the truth. I’m a family physician who was
inadvertently and almost completely by chance drawn into the technical
standards world over the past 5 years, and as a result of caring deeply
about the value of software applications that physicians and their
patients use to help manage clinical processes and make decisions about
health and the treatment of disease. The idea behind the CCR standard
is very simple: if certain relevant health information — such as
one’s diagnoses and conditions, medications, allergies, and past
procedures — can be reliably and unambiguously tagged using XML
(extensible markup language) within a single file, then this
information can then be passed across communications networks where it
can be read and understood by servers and software applications in a
vendor-neutral manner. Software vendors who agree to share this set
of computable health data about a person gain value in the same way
that any network effective product or service gains value, e.g.
telephone and faxes.Users of these products then leverage that value
to become better at communicating and sharing, which over time may lead
to better clinical decisions, fewer and less costly medical errors, and
greater efficiency as hands-off between providers involves less rework
and duplication of effort.

The differences between the CCR standard and the CCD are quite easy to
articulate and explain. The CCR standard is the simpler of the two,
came first, and is in widening use. It consists of a header, a footer,
and a body of health data organized into as many as 17 sections, e.g.
problems and conditions, medications list, allergies list, family
history, procedures, encounters, and so on. It uses a bit of XML
technology, called a schema, to direct how the data are to be tagged
using XML, and to enforce certain conventions such as time and date and
the identification of coding systems used. The CCR’s sections are
optional, that is, a CCR xml file can be valid even if it includes just
a header, a footer, and one section, say the medications list or lab
results of a patient. Of course, the CCR standard can also allow for
other sections to be added on as needed. Google’s CCR profile, for
example, includes 8 sections,  which reflects an industry trend to be
economical with the CCR xml file’s contents and keep things as simple
as possible while momentum builds and experience of exchange is gained.
It is very important to understand that the CCR standard is intended
to structure the data as much as possible. Short textual elements are
allowed, but the purpose of structuring the data using XML tags and
coding systems is to maximize the possibility that the CCR’s data
elements can be both machine readable as well as human expressible.
If there is a bias within the CCR standard community, it is for what
Adam Bosworth calls "computability," that is to say that the CCR
standard is a way of structuring data, and not a way of moving
documents that were previously paper. The CCR standard is not a
discharge summary or an encounter/visit note. It is intended to be a
"snap shot" of a person’s summary health information.

The CCD, or Continuity of Care Document, is more complex, is based upon
the CCR standard schema in part, and has not yet been tested in the
market. It is derived from and must be integrated with other HL7
standards; it is in fact a particular instance of a class of HL7
standards known as the Common Document Architecture or CDA. The
formal designation for the CCD is the CDA CCD, and is described by HL7
officials as having several "levels" which refer to the extent to which
the information in the CCD xml file is  merely textual, as in most
health care documents, or structured, as in the CCR standard. A CDA
CCD level two is a text document with no structured XML, and therefore
no computability. A good example of this type of CDA CCD document can
be seen at John Halamka’s web site entry of
March 6, 2008, examination of the source code for which shows no
structure more complex than an HTML table.  A "level three" CDA CCD
file will have structured XML included in it, in which case it could be
used to exchange computable data machine-to-machine. The CDA CCD’s
structured data component is supposed to be harmonized with the CCR’s
xml, (see HITSP slide), but it’s not clear that full harmonization will
ever materialize. At the time of this writing, the level three CDA CCD
is not used by a single institution on a production basis according to
a HIMSS Analytics Report called "EMR Adoption Model."  One of the
nice things about the CDA CCD is that it can accommodate large blocks
of text from provider institutions that want an XML package for
portability of documents, but don’t have the capability of structuring
data from their EMRs to create a CCR. Many large health care provider
institutions are "document rich," but "data poor," and may want to
approach computability in stages using the CDA CCD.

Anyone who managed to read my descriptions of the two standards above
will likely come away thinking that they are really very different
tools, and address the needs of quite different constituencies. And
that would be correct. Both the CCR standard and the CDA CCD deserve
to be tested in the market place of ideas and products, and both have
their uses, advantages, and disadvantages. The CCR standard is proving
very useful and agile for health data exchange where small amounts of
data can be computed upon using web services, which Google Health beta
is showing to be possible. The CDA CCD is proving useful as a means to
gain portability of formerly paper documents and creates a glide path
for increasing level of computability as the data become increasingly
structured.

Which brings me to the finale of this post, namely, to state in plain
language that interoperability can only be approached in incremental
stages when so much health data and information exists in
non-structured formats. The principle to uphold is the encouragement
of any and all efforts to innovate in the direction of computability
and interoperability, even if some of these appear less than perfect or
even piece-meal. One size will not fit all uses or use-cases, and what
is good for consumers’ PHRs may not be the same thing that works in a
very large medical enterprises. Control over standards by large
enterprises and/or their vendors is spurious, anti-competitive, and
probably won’t be effective. The standards are supposed to make our
lives simpler, not more complicated.

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Chris
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Chris

Kevin,
I’m new to data exchange standards and am hitting the learning curve to get caught up, so I have absolutely no invested interest in either standard. The good thing about this blog is that:
1. It is very informative for a newcomer; and
2. Even without your comments, Kevin, it is quite obvious that Dr. Kibbe is writing from an extremely biased position. In fact, its this type of blind bias that inhibits collaboration that leads to movement forward.
In any case, thanks for your clarification.

Tim Cook
Guest

Dr. Coonan,
Thanks for your well thought and comprehensive response to Dr. Kibbe’s diatribe. You certainly have more patience than I when dealing with this type of misleading hyperbole.
Tim
Member, openEHR Architecture Review Board

WantMoreInfo
Guest
WantMoreInfo

DK: Can you provide any comment regarding Kevin’s specific points, particularly regarding CDA/CCD? In looking over the JAMIA paper it seems he is accurate as far as CDA. There isn’t anything about the CCD in the paper.
Is CCR publicly available for review?

Anonymous
Guest
Anonymous

David, your comments concern me. I’m in agreement with Kevin in finding your motives and facts suspect. Without a standards development process in the United States we’ll have, well, lots and lots of standards. We need to agree to all get behind and support and improve the current ONC/HITSP process.

Kevin
Guest
Kevin

Dr. Kibbe, I don’t quite understand how you think that your patronizing “rebuttal” could be taken seriously without any sort of meaningful comments. If I am in error, please point this out, rather than arrogantly dismissing them with some hand waving. If you wish to be taken seriously and treated with some degree of professional respect, I would request you show some yourself. My facts are drawn from the HL7 specifications, the SNOMED-CT documentation as well as from both IHE and HL7 implementation guides. I have provided ample PUBLICLY AVAILABLE links for yourself, and others, to review. If you wish… Read more »

David C. Kibbe, MD MBA
Guest

Wow. Don’t know what to say. Your “facts” aren’t even close, but you do have a lot of emotion and religious fervor there, Kevin. DCK

Kevin
Guest
Kevin

War, what is it good for? Dr. Kibbe has made a long history of bashing HL7 and anyone else he perceives as a detractor from what he sees as his CCR. Dr. Kibbe has again taken upon himself to employ the standard techniques of fear, uncertainty and doubt to engage in his ongoing and pointless character attack on HL7. Few, if any, of the above statements are true and/or without hyperbole. I also think that Dr. Kibbe’s statement that he doesn’t “..give one hoot..” is far from genuine (esp. given his work w/ Adobe and others on a PDF ‘alternative’… Read more »