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Am Fam Physician. 2004;70(7):1220-1223

For more than a decade there has been agreement in the United States that information technology is a critical part of any effort to achieve high performance health care for everyone. The potential benefits of moving from sequences of disconnected and episodic visits between patients and doctors to continuous connectivity are widely recognized to be of great value to patients, families, communities, investigators, payers and purchasers, employees, health organizations, and physicians.1

A full quarter of a century ago, a uniform ambulatory medical care minimum basic data set was designed and reported to the United States National Committee on Vital and Health Statistics.2 As the 21st century began, the Institute of Medicine articulated yet again the enormous potential for information technology to improve health care quality by enabling safe, effective, patient-centered, timely, efficient, and equitable care.3 The Institute acknowledged that the health care system will move away from the current medical record (an artifact of visits) to health care information that is interactive, real-time, and prospective. The potential contrasts starkly with what has been achieved so far. Now we have an opportunity to accomplish these goals.

The Continuity of Care Record (CCR), is a document standard for basic health information, using XML (extensible mark-up language). It is being developed jointly by ASTM International, the Massachusetts Medical Society, the Health Information Management and Systems Society, the American Academy of Pediatrics, and the American Academy of Family Physicians.

The CCR is intended to foster and improve continuity of patient care, reduce medical errors, increase patients’ roles in managing their health, enable epidemic monitoring and public health research, and ensure at least a minimum standard of secure health information transportability. It is not an electronic health record or proprietary software. It is compatible with other efforts to standardize health information systems and can actually work across these efforts. The CCR is one tool for realizing goals held by the Institute of Medicine for a decade.

Currently, patient care can be disrupted by the incompatibility of information technology in different physicians’ offices and hospitals. In each care setting, patients and physicians are frustrated by reliance on fax machines, telephones, and patient memory to reassemble information that already has been collected at least once before. This system is not only inaccurate, it is also dangerous for patients. Furthermore, it is wasteful and expensive.

Exchanging data as personal and important as health care information throughout the country should be as easy as using an ATM card. One way this type of information exchange has been accomplished with other applications is for a market leader to set the standards that other vendors typically follow. However, the number of health information systems vendors, and the proprietary nature of their software and services, is increasing. A recent survey of nearly 1,300 family physicians who use electronic health records in their practices found that 264 different software vendors were used, the largest of which was used by only 148 physicians (Center for Health Information Technology, unpublished data, January 2003). None of the 264 products currently shares data with any of the other products.

With the CCR, we propose concentrating on the data, not the computer systems. By separating the data from their uses and the programs that handle them, we can ensure that the data are accurate regardless of how, when, or where they are presented for access. Just as documents open in any of several word-processing programs, the CCR allows disparate information technologies and software programs to read, interpret, and transmit a core summary of personal health information.

A growing number of clinical information systems companies agree to implement the CCR, and the prospects are good that widespread adoption of this first interoperability standard can be achieved in 2004 and 2005.

The CCR is also portable, allowing patients to carry with them a summary of their most important personal information. It can be printed, carried on a USB (universal serial bus) “thumb” drive or smart card, e-mailed directly to a physician, or uploaded to a secure Web site, where it can be accessed with consent. Wherever a patient takes the CCR, the data in it, such as recent blood pressure readings, a current list of medications, medication allergies, and laboratory test results, can be accessed for immediate use.

The CCR also has the potential to empower patients to participate in managing their health. For example, patients could use the CCR on their home computer to review medications for drug-drug interactions or to synchronize their dosing schedule with a personal digital assistant. Software on their home computer or on a secure Web site could use CCR content about age, sex, and previous conditions to send alerts to patients about immunizations and recommended screening tests. Combinations of health information elements, such as current medications, age, and allergies, could help patients locate clinical trials and support groups, or serve as a filter for personalized medical information searches on the Internet.

Although some people may worry about the privacy implications of portable health information, the Health Insurance Portability and Accountability Act (HIPAA) actually supports the widespread adoption of the CCR. HIPAA explicitly establishes that patients have a legal right to access their own health information in all but exceptional cases, and it mandates assured security of those data while they are in the health care facilities’ computers or during transit. Hospitals and physicians must take specific privacy precautions but would be obligated to provide patients with their CCR on demand. What patients choose to do with their CCR would be up to them.

HIPAA-compliant mechanisms of extracting de-identified health data also could improve research and public health endeavors. Today, efforts to study the effects of care on health, identify epidemics and bioterrorist attacks, understand population health over time, and make better decisions about health care spending suffer from a lack of access to basic health information at the population level. The health of all Americans could benefit from the use of de-identified data to meet widely accepted public health objectives.

The advantages of this simple and inexpensive personal health information standard are compelling. Patients and their primary care physicians would no longer spend time sorting through prescription bottles, tracking down specialists’ notes, or trying to remember when to obtain appropriate preventive screening. The CCR becomes a tool for the patients and their primary care physicians that helps them integrate their care and spend time making better choices from the chaos that is health care. In this way, the goals for each patient can be supported and maintained by the CCR, keeping everyone on task.

In the future, primary care physicians will comprehensively review and update the CCR as a fundamental deliverable of a 21st century annual health check-up. The CCR will save time, be patient-centered, reduce the risk of medical errors, and save lives.

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