The drive to establish the Continuity of Care Record
There are many efforts for improving on the sharing of patient data between healthcare organizations for better patient care and especially to reduce dangerous medical errors. One of the key ongoing related developments is the Continuity of Care Record (CCR), a standard for patient care information that is being jointly developed by a number of organizations including ASTM International, the Massachusetts Medical Society (MMS), the Health Information Management and Systems Society (HIMSS), and the American Academy of Family Physicians (AAFP).
As with any industry standard, there are a number of hurdles that must be overcome before it can be widely applied. An expert in CCR, Jeff Sutherland, chief technology officer of PatientKeeper, Inc., discussed with Health Imaging News the urgency in determining a standard specification and where he thinks it's headed.

What is CCR and where did it begin?

The CCR [Continuity of Care Record] is an attempt to solve the problem of moving information from one medical record system to another so that patients who come in for treatment from a doctor in California, for example, who happened to be a resident in Massachusetts, could have easy access the records in Massachusetts.

Nowadays, particularly when [physicians] are prescribing, they really need to know what medications a patient is already taking, and there are really only two ways to determine that today. The patient is a very unreliable source. The only way to determine that is to go to a patient's insurance company that has a record of what medications have been billed through insurance, or go through their pharmacist.

I was recently talking to Charlie Baker the CEO of Harvard Pilgrim Health Care, and he said, 'Jeff, you're an expert on inpatient medical error and there are hundreds of thousands of patients dying on the inpatient side, but on the outpatient side how many physicians do you think know the patient's medication list before he or she is treated?' And I said, 'None!' And he said, 'You're right. In Massachusetts [physicians] either have to contact us if they are a member of Harvard Pilgrim or contact the pharmacy, because there aren't any physicians in Massachusetts who will take the time to do that.' Therefore, every physician is prescribing in the blind. And the outpatient error rate is probably higher than the inpatient medical error rate. There is very little data on that.

How could the CCR help address this problem?

The Continuity of Care Record is an attempt to assess what is the minimum amount of information that a physician needs to treat a patient properly, given that today they often have virtually no information. So, the probability of error is extremely high.

Are there competing standards out there?

There are a number of standards bodies. The problem with that is that the main standards body for health information is the HL7 (Health Level Seven) organization. And most hospitals and the government and many foreign countries all adhere to the HL7 standard.

HL7 does this through what they call Clinical Document Architecture (CDA), which is a standard; but what they want to do is define templates within that architecture that convey the minimal set of information needed to treat a patient  -- which is equivalent to the CCR. So, there's some contention between the CCR and HL7, though they are both government approved standards organizations.

The vendors, working under the HIMSS umbrella within an EHR vendor committee, have tried to advocate standards in the electronic health record area and they want to see one standard. No matter what it is, there's got to be one.

The ASTM group doing the CCR is supposed to meet with the CDA group from HL7 in an effort to harmonize what they're doing so that the same information is being transferred in both standards so that one standard could encompass the other. 

The problem is that it's still an open issue and not resolved from the point of view of the healthcare community right now.

So, the CCR is in a process of evolution. Will just one standard eventually exist, or might they be combined?

The government in the form of the CDC (Centers for Disease Control and Prevention) and the FDA (U.S. Food & Drug Administration) are all committed to HL7. The vendors just want one standard. They're willing to implement either one, but they want one. So until there is generally agreement between the standards bodies, it's hard for people to move forward. The second-level issue of this is getting [information] systems to interoperate.

The problem with healthcare is that we have isolated islands of expertise. A patient as he or she moves through the system gets in contact with multiple different people and processes and systems and technologies and medications. One hand doesn't know what the next hand is doing, and people fall through the cracks and die. Inpatient medical error is the third leading cause of death (not including outpatient); just the hospital error is killing more people than anything except cancer and heart disease.

Of course, the CCR is the proposed solution to this problem.

What type of information does the CCR require?

The CCR is a standard, though very specifically defined. It is a bunch of header information about a patient which says who they are and where they live and who their referring physician is. Then it has other information, much of which is optional, which says here's the medications the patient is on and here are the problems they are being treated for. It's really a snapshot in a state in time. The latest information from the system that is sending the information from the place the patient was last seen.

Is it like a browser, or some type of portal or other software application?

No, that's just a definition. In terms of implementation, that the vendors and healthcare institutions need to figure out how they are going to implement it. A company can do anything it wants to get that information in that format.

Does the HL7 Clinical Document Architecture standard do something similar?

Through the HL7, you could send just the medication information [of a patient], or something more like the CCR which is more detailed, or maybe the entire medical record from one system to another. The CDA is designed to do that in a generic way. In terms of emulating the CCR, that is just a template that is a small subset of what the CDA can deliver. So, HL7 has been defining that template. The issue is whether the data in that template are different or the same as the CCR. And if they're different, how are they going to resolve that difference?

Does PatientKeeper plan to introduce a CCR solution?

Right now PatientKeeper interfaces and integrates seamlessly with many back-end clinical systems and our mission is to integrate with any of them. So, let's take a system that we are already intimately connected with such as Cerner. We can display on our handheld devices and on our desktop web browser every clinical result in the Cerner system that exists. From the point of view of saying what is the CCR we could just say, well let's just send them the last day [of a patient's medical history] and that will be the standard. That's how simple it is for us to deliver. It's easy for us to change the format at will. The question is: what's the standard way to send it so the receiving system can interpret it?

It seems impossible for all of these different systems to be able to communicate. Is it?

Well, PatientKeeper has a very different mission than a lot of the vendors. From the beginning, it has been to be able to take any back-end system and present it to any front- end device. PatientKeeper's business is translating any clinical information from any system into a format that is readable by another system or device.

All we have to do is have people decide on the standard and want to buy it.

Is it possible to discuss a timeline for delivery of a standard?

It appears that HL7 moves fairly slowly and will not come to closure with the template until at least next year. Worst case it could even be the following year.

Yet, CCR is ready to go?

Yes, CCR is ready to go.

About Jeff Sutherland: Dr. Jeff Sutherland holds a PhD, MS Statistics and Mathematics from Stanford University and a Doctorate in Biometrics, Medical Imaging, and Radiation Physics from the University of Colorado School of Medicine. He is Object Management Group/HL7 Liaison, Committee Co-Chair HL7 Orders and Observations Technical Committee, Co-Investigator, Operating Room of the Future, University of Maryland Medical System, and member of the Microsoft Business Framework Advisory Council.