While at Massachusetts General Hospital last week, as a guest of The Stoeckle Center for Primary Care Improvement, I was invited to meet the team at the Laboratory of Computer Science based at MGH. The Lab of Computer Science produces the OnCall series of clinical web portals, which are a front end to the Computer Stored Ambulatory Record medical record system.

The reason it is a “series” and not “a front end” is because this system actually has brands that are specific to the specialties and care that it supports. Here’s a picture from a computer screen that shows them:

This is a bit overdue for me given that I learned what I learned about CCR at the ASTM Workshop in May, 2008, conducted by David Kibbe, MD, MBA, and Steven Waldren, MD. I think what I learned is important for supporting patient-centered HIT, so I’m putting my summary here. A reminder that the beauty of Web 2.0 is that nothing is ever finished - feel free to clarify or correct anything I’ve gotten wrong.

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

• Health Management Rx: Good News/Bad News - CCHIT To Certify PHRs - Helpful guidance as PHRs enters the realm of CCHIT

• CCHIT Goes After PHRs « Chilmark Research - commentary on PHR certification process

The members of Personal Health Records PHR Work Group Members - CCHIT Certification Commission for Healthcare Information Technology were announced today, click on the link to see the list.

It’s a pretty impressive group, myself excluded :), and I look forward to participating. Because CCHIT handles proprietary information, I won’t be blogging about my volunteer position with this group here.

CCHIT operates its own web site which includes opportunities for public commentary, and it also operates the EHRDecisions Blog, which I subscribe to.

• The Health 2.0 Blog: Google Health beta — What’s really new and different? - Nice commentary from David Kibbe - looking at the advantage to all of health care (and health) that come from moving to standardized movement of data. I agree.

• NAHIT Releases HIT Definitions | News | Healthcare Informatics - Long awaited, and helpful. The difference between "P" and "E"HR appears just to be control. "P"HR is controlled by the patient. I still believe that the customer of both is the patient, and these definitions are consistent with that idea.

• McCain Makes Health Records Public - Could he do it using CCR? - Without commenting on the content of Senator McCain's health care record, wouldn't it be cool (if he approves) to release it in CCR format to show the promise of the standard? Same for all the candidates?

Colleague in patient empowerment Susannah Fox e-mailed me this question and so we thought we’d start one.

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.

I learned about this at the CCR workshop. The CCR accomodates elements of this, but CMS has not endorsed it yet as a standard.

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