Is a $100 per license a significant hurdle in the use of open standards? Guest writer Alan Viars fleshes out a conversation he and I had on Twitter recently, related to some thinking about the open sourceness of open standards. Applause to Alan for putting the information out there for public comment and review, in the interest of making health care data easier to move around.

ePatientDave asked:

Long story short – the CCR schema is not freely available ($100) so pts can’t discuss whether Goog should have implemented other Types for Functional Status. They only did Pregnant and Breastfeeding. Some of us wanna know what they other available values are.

David Kibbe wrote us both in e-mail:

Dear Dave and Ted: It’s great to have these questions asked, and important to respond. The Functional Status data object (section) of the CCR standard may include any condition that the user/implementer thinks is related to functional status. Google Health has given as examples pregnancy and breast feeding, with SNOMED codes, but one might also enter “BKA right leg,” or “severe respiratory impairment due to COPD,” with codes for those.

The reason for this: There is no formal vocabulary within the industry or profession for Functional Status, and so the standard doesn’t refer to one. Perhaps there should be, and I think that as people start to use the CCR standard for health data exchanges, it may be one of the things that the industry needs and then creates. The same can be said for the CCR standard’s data object (section) on Advance Directives. While there are some industry conventions for descriptors here, as “do not rescucitate,” and codes may be found for these, there is no universally agreed up set of codes that could be plugged in here that everyone would accept.

Lots and lots of work to do! We’ve laid the path, but we certainly haven’t put in all the sign posts, paved the road with asphalt, or installed traffic signals!

One other comment: The CCR standard is not a formal data model. It could very well become the basis of one. But people think, sometimes, that this is all perfectly arranged and designed, to the point of being a data model. And that would be correct.

Hope this is helpful.

I think that the Participatory Medicine folks should help the CCR standard community to build a CCR Wiki that would move this all along a bit faster. What do you think?

Kind regards, DCK

And a follow-up from David:

Steven and I have also done a number of CCR Training Workshops for programmers and developers, the so-called “deep dive” into the CCR standard. And I’ve started an entry in Medpedia on the CCR standard. http://wiki.medpedia.com/Continuity_of_Care_Record_(CCR)_Standard

As well as one from Steven Waldren, MD:

There is a fair amount of material on http://www.ccrstandard.com about the CCR. I also did a video tutorial that goes over the schema at a high level. It can be found here: http://www.ccrstandard.com/schemaoverview

Thanks to all for their support of this conversation being transparent.

As an aside in my own work with a colleague, we’ve discovered “At this time, Google Health does not support diet and exercise information, nor images such as x-rays.” (From their Third-Party Services Overview).

Clearly we have some more work to do for these standards and the services to use them to capture information that’s as health related as medications or lab tests (see my series of posts on Safeway’s Food PHR, FoodFlex)

The seminar itself was very enjoyable, nicely paced, and I learned as much from the students (including fellow blogger Vince Kuraitis and Sam Faus from Sujansky and Associates) as from the teachers – that’s always the right combination.

Why was CCR created?

CCR stands for “Continuity of Care Record. (link to official site here) ” I think the “why?” of anything is the most important – knowing where things come from tells us where they’re going…

In 2003, there was a desire to figure out a way to take the “green form,” which health care providers used to transmit a patient’s medical record summary to the nursing home, digital.

(In the clinical arena, the transfer to a nursing home is one of the most delicate times for a patient and their family. Inaccurate or missing information can have an enormous impact when the receiving institution is not staffed to reconcile and adjust therapy the same way a hospital is.)

In their discussions, David told us, they began asking about making this XML-based standard “a record for the patient” that could be used for all kinds of care transitions, not just to the nursing home. And so, CCR was born.

(Comment from me – (a) yet another innovation from those in our profession who care for our geriatric peers (b) CCR is fairly new on the scene, 2003 is recent in Informatics history)

CCR was vetted through ASTM International, which from my understanding, is atypical for this organization, which now has a very small focus on Health Informatics. There are other standards bodies, most notably HL7, that have traditionally working in health information.

What exactly is CCR?

Note: The paragraph below is superceded by the comment attached to this post by David Kibbe, MD, which more accurately explains the content and licensing of CCR. Thanks, David!

CCR is two basic things – a “Schema Definition” that resides an a fairly easy to read spreadsheet. And an implementation guide, which provides the “how to” of every element. Both are licensed under the Apache GNU License. This is not 100% the same as open source – but I think it does mean anyone writing software can use this standard to move data around.

CCR uses eXtensible Markup Language, or XML. XML is very standard in modern Web applications. For example, the piece of software that I am writing this blog post on is going to send my words via XML to my blog, and my blog doesn’t really care what software I used to send it my words from, as long as it uses the right XML code to contain it in. This is important in a standard – it’s connected in a logical way to standards already used by other industries to move data (getting us away from the “health care is different” model).

Is CCR supposed to help with portability and interoperability?

As David explained to us. These are two different things. Portability means you can move the information to another place, via paper, fax, or digitally. Interoperability is the ability of “XHR” software (“X” can mean “P” or “E” for EHR or PHR – get it?) to communicate and exchange data so it can be used for its intended purpose, for example to trend with data like it, or to be used to support population health.

CCR is supposed to help with both, using an approach that is not based on a paper chart – it is concerned with vendor-neutral, human and machine-readable structured data.

Why isn’t CCR based on the concept of a medical chart?

I have worked in large systems that computerize medical charts using state of the art software. This part took me some time to understand. A medical chart is divided into various sections, organized a certain way (depending the doctor/hospital where it’s used unfortunately), and serves various clinical and legal functions. It’s a lot of things to a lot of people.

CCR on the other hand, is more like, “What do I need to know about you (and what do you, the patient need to know about you) for you and I to take care of you right now.” It’s a summary of the most important things, but not necessarily everything. At the same time, it can have multiple observations, like a list of past blood pressures for example. It can be a summary of just one outpatient visit, or of 10 years in a healthcare system. It’s flexible that way. We learned that MinuteClinic, Inc. uses it in the former way, to “summarize” one visit to a practitioner and transmit it as needed by the patient.

Part II coming soon: More of What I Learned about CCR

Jay Parkinson, MD, linked to a discussion happening on Digg in his blog. E-patients is also hosting an informed discussion on their blog.

Is it cliche to say that this is evolutionary, not revolutionary? I think it’s of benefit to patients and our profession that a dialogue has started around moving health care data in a standardized way to a place where people can aggregate and do things with it to improve their health. A year or two ago, it was hard to think about a standardized extract of a medical record that you could send from an EHR system except in very specialized situations. Now you can do with several partners, Google being the most recently announced option.

I didn’t even think about writing a special post about it, even though I thought, “Cool, this work will support the ideas I am exploring with the California Healthcare Foundation, that patients can be involved and active in their care, across health environments (health system, work, play).” So rather than writing about it, I just incorporated the possibility into the work we’re already doing, which is great.

I think of privacy as a state of being that allows a person to feel comfortable seeking health care regardless of the issue. This is a good place to be, and when that state of being doesn’t exist, people will seek it out, even if it means not seeking needed care, which could be devastating both to patient and health system. At the same time they seek comfort, they also want to build confidence in their ability to manage their health by having as much information their care as possible. In systems where patients have good access and trust, the care is better, and it feels great (and is great) to provide and receive care in that setting. Both things are important, we should not sacrifice one for the other; every patient deserves to achieve their life goals through optimal health.

AMCP.org – Comments on Standard SIG – The NCPDP was working on the standard for Med Sigs – a little background

• CCR Product Compatibility List — AAFP Center for Health Information Technology – Adoption list of CCR – not up to date, but gives a glimpse of who has been involved.
• Montana Healthshare – Montana organization to use CCR to improve population health
• Solventus CEND/PHR – A reference implementation of a PHR using CCD, developed by Stephen Waldren, MD and David Kibbe, MD
• PDF Healthcare – A technology platform for enclosing historical documents – can contain a CCR
• SourceForge.net: CCR Acceleration Resources Project – The XSLT transofrm from XML -> HTML for CCR
• www.ccrstandard.com – Continuity of Care Record (CCR)Standard — Resource Site _uacct = “UA-2242673-1″; urchinTracker(); – Home base for CCR
• “I hope that some day you get your wish” – "Medicine has a 100% failure rate" – a discussion of physicians in information technology.
• The WETA Guide to Fine Dining | WETA TV 26 – A nice series on DC treasures
• The Health Care Blog: PODCAST/CONSUMERS/TECH: Interview with Joseph Kvedar, Partners’ Connected Health guru – Information about ConnectedHealth and the EMC pilot they are doing

I took the workshop on behalf of my work with the Calfornia Healthcare Foundation to look at creating a connectivity ecosystem for patients, families, and health stakeholders in a community, which I’ve started to blog about here.

It was a good workshop, with a nice step-through of the CCR standard, which for me was fairly straightforward to follow. Here’s a screenshot of the XML schema of a sample (test) CCR XML file. If you’re medically inclined, you’ll see that it’s an XML representation of a prednisone taper. I didn’t put this XML file together, but I consider this a sort of “hello, world” – to show that a clinical summary can be represented with a human and machine-readable file.

CCR is figuring into many well publicized Health 2.0 applications and I am of course a fan of anything that has its genesis in engaging patients in their care.