Behold the Amazing Continuity
of Care Record

This technology could put patients’ health records in their pockets. Will it prove to be the first step to EHR interoperability?

BY KATE MCCANN

Attention all family physicians. Prepare to read about an exciting, brand new technology that promises to revolutionize your practice, make patient interactions thousands of times easier and instantly transmit data from physician to physician like magic! And, all this in one easy step! Well, almost. The continuity of care record may change the way you interact with patients and how data is shared between caregivers, but that “one easy step” claim may be a bit of a stretch.

The continuity of care record, or CCR, is a set of data consisting of the current and past health status and treatment of a patient. It is stored in a digital format that is easily read by a variety of tools, including a Web browser and it enables the physician and other health care personnel to select specific information from a health record so that it contains the most relevant data for treatment. Patients would be able to hand their CCR to their physician on a compact disk, a USB drive that they carry on a key chain or transmit it through secure e-mail. It could also be e-mailed between physicians or physician-to-hospital.

Claudia Tessier, executive director of the Mobile Healthcare Alliance, or MoHCA, says that developers are looking to CCR technology to enhance patient safety, reduce medical errors, reduce cost, simplify health record exchange and ensure a standard of care between physicians.

Apart from giving patients more access and ownership to their own health record and providing physicians with a more complete patient history for first timers, the health IT experts hope that the CCR is one of the first steps toward accepted standards that will lead to total EHR interoperability.

Each CCR contains various sections such as patient demographics, insurance information, diagnosis and problem lists, medications, allergies, advance directives and care plans. Together, these represent a “snapshot” of a patient’s health.

By keeping an ongoing electronic record of a patient’s activity, the CCR can be referred or transferred between caregivers and would provide accounts of care to each physician, nurse or ancillary practitioner who uses it.

“Now we’re using the data intermediary XML, the structured way to represent data, that was developed by the World Wide Web consortium,” says Richard Peters, M.D., technical consultant for AAFP’s Center for Health Information Technology. “It was derived from HTML, a prior standard that allows data to be represented in a non-proprietary format. This is the most widely-used way to represent data.”

In XML, the CCR will be both human- and machine-readable as the data may be displayed in a variety of formats, including by Web browser, PDF or word processor. The final standard CCR will be available in an electronic or hard copy format and will consist of a seven- to eight-page document and a spreadsheet.

Keeping relevant record information easily accessible can be useful to both physicians and patients. In a nationwide survey published in the journal Health Affairs (Vol. 24, No. 3), one-third of the physicians polled said that their patients were more likely to ask them about the quality of their care than two years ago. For patients, quick access to personal CCRs with a USB or mobile device could increase involvement and knowledge of care. As patients make initial visits to physicians, they would not have to fill out a “health history” information sheet, repeating the same information over and over again. Since the CCR can “populate” an electronic health record, automatically filling in required fields, developers think the technology could reduce errors.

“If I can go in to a new physician and say what is pertinent to my record, this is the means of a strong starting point,” Tessier says. “The redundancy is horrific and potential for error is high when patients go from doctor’s office to clinic or clinic to hospital.”

The CCR consists of four major parts: the header, body, footer and separate spreadsheet. The header contains a unique identifier that is usually created by the CCR provider. This introductory section includes the date and time the CCR is created, name of patient, name of physician, names of the intended recipients of the CCR and the reason the CCR was created.

The body can contain clinical data sections with resuscitation preferences, living wills and patient sources of support. Also in this bulk of data are current living habits, health problems, family history, societal history, medications, immunization records, vital signs, lab or X-ray results, pertinent health care encounters and health care providers.

“The whole point is that the CCR is not the whole record but enables the physician and other health care personnel to select the most relevant information from a health record, so that they or the next physician doesn’t have to look at everything,” Tessier says.

In the footer, all actors are identified, including the patient, physician and place of care. Following would be any references to outside documents such as power of attorney, comments referenced in the CCR but not found in other fields and digital signatures. Digital signatures provide a guarantee of security, working much like a password. If a physician signs a document with a digital signature, it proves that the physician signed it, assures whoever receives it that it came from the physician and assures that the information hasn’t been changed during the transferal.

The spreadsheet provides a detailed list of data groups within the CCR relating to problems and medications. It will also contain XML codes and standards for interoperability to ensure the capability for sharing information.

The CCR document could be exported from one EHR and imported into another EHR. For the physicians who have already implemented health information technology, the EHR software is viewed as the “central nervous system” of their practice. Many physician organizations as well as the federal government are encouraging physicians to adopt EHR technology in hopes that technology will help improve the quality of care and reduce the cost of care provided in the United States. One major roadblock to adoption of health information technology is the current lack of interoperability between systems. Today’s EHRs can’t talk to each other.

There was a time in the early days of personal computing that word processing programs didn’t talk to each other and posed problems to users of different software. Microsoft Word couldn’t open a Word Perfect document and vice versa. Software programmers eventually had to agree on a set of standards, which is the same problem that health information technology faces today.

Many EHRs are “data islands,” so the current capability for sharing runs into problems with interoperability. If each EHR system runs with a different program, it could be unreadable to different caregivers. The CCR would provide a standard foundation for EHRs to plug into.

“When physicians buy CCR-compliant products, they can get messages from one EHR system to another, transfer to another vendor’s product, make e-referrals and participate in RHIOs [Regional Health Information Organizations] and health information exchanges,” David Kibbe, M.D., director of the AAFP’s Center for Health Information Technology, says. RHIOs are local, state, or regional efforts to share health data between providers, physicians’ offices, hospital, community and public health clinics.

Development of the CCR started as an outgrowth of the Patient Care Referral Form designed and mandated by the Massachusetts Department of Public Health for use primarily in inpatient settings. Now a number of health IT entities are in negotiations to hammer out the differences between competing CCR developers.

One of the standards organizations involved in the development process is ASTM International, originally known as the American Society for Testing and Materials. The AAFP Center for Health Information Technologies has been working closely with ASTM along with the American Medical Association, the American Academy of Pediatrics, the Health Information Management Systems Society, the Patient Safety Institute, the National Association for the Support of Long Term Care, the American Health Care Association and the Mobile Healthcare Alliance to facilitate these negotiations.

“There are many CCR competitors and the industry isn’t really happy about it,” says AAFP’s Richard Peters, M.D. “Generally they compete with each other, and right now there are two approaches: one is the ASTM CCR.” The other is in the process of being developed by Health Level Seven, another standards developing organization. Their approach is centered on what they call the Clinical Document Architecture, or CDA. “AAFP doesn’t have any particular bias other than defining interoperability, and there wasn’t a drive to interoperability before the Massachusetts Medical Society pioneered the effort, followed by AAFP, AAP, MoHCA and HIMSS,” Peters says. “The sponsors work together to put the standard together and get their organizations behind it, but the key point is that the CCR is developed by clinicians to address the exchange of data from a clinical perspective,” Peters adds. “It is developed by physicians of all specialties and is done in the language that physicians would use.”

In June, AAFP’s CHIT worked with TAFP to host a very important two-day conference for CCR developers, users and health IT vendors in Irving, Texas. Much of the discussion centered around the current state of “harmonization” efforts between these two standards. Conference leaders distributed the latest version of the draft CCR, projecting that a working model could be available to health IT vendors by late July.

Even with all of the talk about electronic health records, physicians who have not implemented an EHR system in their practices would not necessarily need an EHR to use the CCR.

“The CCR can be constructed using Web-based tools and read by a Web browser,” Kibbe says. “All physicians have to have to access the CCR is an Internet connection and a browser.”

Physicians or caregivers will create the CCR at the end of a visit to their clinics, hospitals or places of care. The physician or caregiver can then use the CCR for referral, transfer or discharge. With a referral, the referring physician could transmit the CCR information to another physician electronically, along with an explanation for referral. A transfer would allow the discharging physician to transmit the CCR to the new caregiver and new clinic where the patient is being sent, even before the patient arrives. After a discharge without referral or transfer, the CCR could be provided to patients in paper or digital format for follow-up care or with their regular physicians.

“Some family physicians may groan at another added task [of filling in a CCR], but most should think about this in the opportunities it provides to the patient. It makes their health information more convenient and more meaningful to them,” Kibbe says.

In its CCR policy statement, the AAFP stresses that the ASTM CCR standard has been designed by practicing physicians, nurses and technologists. In this manner, the standard should permit easy creation by a clinician using an EHR software program at the end of an encounter by using simple Web-based tools.

Besides the task of creating the CCR, one major criticism is with privacy issues. Can your health information be stolen or lost? Kibbe says that privacy issues exist wherever patient health records are stored, whether in a computer or filing cabinet. Under HIPAA regulations, a physician must provide patients with their medical records if they request them. While the CCR could make this transfer of information more efficient and standardized, the physician loses the control of who sees the record when it is handed to the patient. The real issue with privacy, he says, is in how the patient chooses to disclose his own information.

“Patients can delegate responsibility to store info with physicians and health care providers or a commercial entity like Wal-Mart or their bank. There are no HIPAA regulations for commercial entities like there are for providers,” Kibbe says.

Confidentiality must be provided and conformance to regulations or security measures must allow only properly authenticated persons to access a patient’s CCR, says Tessier. The storing of data and its protection is up to the physician or hospital and in what format the CCR is created.

ASTM recommends confirming information in a CCR before it is used in clinical purposes or other decision-making. For accuracy and safety, fields such as the CCR insurance information, current medications and other critical data should always be checked.

AAFP’s role in developing the CCR leads it to set four guiding principles of affordability, compatibility, interoperability and data stewardship that coincide with the needs of member physicians. Affordability is key for keeping health information technology available to small- and medium- sized practices within the network. Compatibility means that one system should be implemented without the need to completely replace it with new components every few months or years. AAFP hopes that systems will be based on standards, providing a “plug and play” compatibility that allows every user to have the up-to-date program. Interoperability looks to standards within data collection and storage that will be able to be shared between physician, health institution or pharmacy. Data stewardship means that while patients are ultimately in control of their health records, clinicians play a guiding role. AAFP says that physicians should be in control to choose an independent third party to steward their data system.

A look to the future reveals a long road, not just “one easy step,” but the CCR could be the first step on this road. In the Health Affairs survey, fewer than half of the physicians polled said that they could easily identify patients by age group, what a patient is being treated for or what medication or combination of medications the patient is taking that would require further observation. More than two-thirds of physicians polled reported that they do not “routinely or occasionally” use EHRs, although two-thirds believe that quality-of-care data should be shared between those in the medical world.

“Every change meets resistance, and I don’t believe [widespread adoption] will be a simple thing,” Tessier says. “The health care world is not an electronic world at this point. It will take the support of the medical society, but there is already support from vendors, providers and provider institutions who are offering ways to facilitate adoption. The CCR is about relevancy and importance to patient care.”

Additional reporting for this story by Jonathan Nelson.