Patient Health Information Management: Searching for the Right Model


Accurate and timely health information is a crucial element in the medical decision making process during a medical encounter. Inadequate or misleading patient health information can lead to medical errors, inaccurate decision making, and increased cost. Providing physicians with access to every detail of a patient’s medical history is difficult.

Striking the balance between adequate and effective amounts of information is difficult. The Personal Health Record and Continuity of Care Record have emerged as concepts to support that balance.

This paper reviews recently published literature on (1) approaches to personal health information management, (2) distinctions between terms and definitions describing patient health information, its format, its availability, and its accessibility, (3) guidelines, studies, or standards to support the rationale of patient information data elements that should be available to the provider for any medical encounter, and (4) identification of the most important needs for patient health information that should be addressed. The purpose of the review is to clarify the benefits and detriments of the different approaches as well as to provide some recommendations for the right model of patient health information management, focusing on the idea of the appropriate health information being available when needed.

关键字: ASTM Continuity of Care Record, Personal Health Record, Patient Health Information, HL7 Clinical Document Architecture, HL7 Electronic Health Record Functional Model, Electronic Medical Record, Electronic Patient Record, Computer-based Patient Record


Recently, much attention has been paid to interoperability of medical record systems to allow patient information to be available, accessible, and shared across organizations and with the patient. When President Bush, in his State of the Union Address on January 20, 2004, announced his plan to ensure that most Americans have electronic health records within the next ten years, he laid out a framework for this effort and underscored the importance of making patient health information electronically available “at the time and place of care, no matter where it originates.”1Over a year later, the National Committee on Vital and Health Statistics (NCVHS) responded to President Bush’s vision with a report on Personal Health Record (PHR) systems that “describes initial findings from national hearings covering the many types of systems referred to as ‘Personal Health Records,’ suggests areas for further exploration, and offers twenty recommendations for…[President Bush’s] consideration.”2In this letter, the NCVHS pointed out that “there is no uniform definition of ‘personal health record’ in industry or government, and the concept continues to evolve. Experts often use the concept of the PHR to include the patient’s interface to a healthcare provider’s electronic health record. Others consider PHRs to be any consumer/patient-managed health record. This lack of consensus makes collaboration, coordination and policymaking difficult.”3The ever-increasing number of different products available on the market, emerging new standards, and the disparities among healthcare institutions only add to the complexity of the matter. Therefore, the purpose of this paper is to clarify and categorize different approaches to the idea of having the appropriate patient health information available when needed and to recommend the best model.


The Institute of Medicine (IOM) estimates that of the 98,000 Americans dying each year from preventable medical errors, one-fifth of these errors are linked to the lack of prompt access to patient health information.4Recent experiences with disasters like Hurricane Katrina caused the disappearance of thousands of medical records.5 Patients also commonly leave clinics with no tangible information about their medications, goals, or plan of treatment.6因此,重要的是要审查文献,以确定患者荒地信息管理的最佳方法,并推荐一个可以解决上述问题的模型。


The aim of the search was to find the most recently published articles on the subject of patient health information management. In order to concentrate the search on electronic health records and their availability, we used the terms electronic, patient, health, information, availability, and record to search the Internet. The Google search produced 25,100,000 items, and the PubMed search produced 33 items. From the initial review, we were able to select terms pertaining to patient health information management that were most frequently addressed in these articles:Electronic Health Record (EHR), Electronic Patient Record (EPR), Electronic Medical Record (EMR), Personal Health Record (PHR), ASTM Continuity of Care Record (CCR), Patient Medical Record Information (PMRI), interoperability, Master Patient Index, Regional Health Information Organization (RHIO), Health Information Exchange (HIE), Smart Cards, Health Information Management (HIM), Medical Internet, Computerized Patient Record (CPR), Computer-based Patient Record (CPR), and Computerized Medical Record (CMR)。We used each of these terms to obtain articles to further explore each of these concepts. By reviewing the findings, we were able to determine that some of these terms are used interchangeably to describe the same or similar concepts. We were also able to select seven terms that represent different approaches or serve different roles in the process of patient health information management.

Body of Review

There are thousands of articles proposing different types and methods of making patient health information available. Many terms are used to describe these methods.

表格1presents terms and definitions pertaining to patient health information storage and management. The first three terms (ASTM CCR, HL7 CDA, and HL7 EHR System Functional Model) represent standards. The first standard (ASTM CCR) focuses on the content of patient health information, and the second (HL7 CDA) focuses on the format of patient health information.7ASTM (American Society for Testing and Materials) International is one of the largest voluntary standards development organizations in the world—a trusted source for technical standards for materials, products, systems, and services. Health Level Seven (HL7) is an ANSI-accredited, not-for-profit standards-development organization whose mission is to provide standards for the exchange, integration, sharing, and retrieval of electronic health information; support clinical practice; and support the management, delivery, and evaluation of health services. Since we were trying to determine what information should be available rather than how it should be formatted, we focused on ASTM CCR. The third standard (HL7 EHR System Functional Model) “provides a reference list of functions that may be present in an Electronic Health Record System (EHR-S).”8A document discussing this standard points out that there are a number of definitions pertaining to EHR and that the standard will not create a new definition but “utilize existing definitions that include the concept of EHR Systems as a system (at least one) or a system-of-systems that cooperatively meet the needs of the end user.”9下一个术语(EHR,EMR,CPR,EPR)代表由医疗机构创建和维护的不同类型的电子患者健康记录。最后一个学期(PHR)代表患者或医疗保健消费者维护的患者健康记录。专注于应随时可用的患者信息的想法,我们将这些概念分为三个类别,代表了三种模型的患者健康信息管理:(1)电子健康记录组模型(EHR,EMR,CPR,EPR),(2)个人健康记录(PHR)模型和(3)护理记录的连续性(CCR)模型。

The Electronic Health Record Group Model

Although there are differences between Electronic Health Records (EHR), Computer-based Patient Records (CPR), Electronic Medical Records (EMR), and Electronic Patient Records (EPR), all these terms describe systems that provide a “structured, digitized and fully accessible [patient] record.”10(SeeTable 2。) The main idea behind these systems is that they will be linked together by a patient identifier. Unfortunately, it is very unlikely that the concept of national patient identifiers will be ever accepted in this country.11没有这样的标识符,不同系统之间的完全互操作性将非常复杂且实际上是不可能的。因此,每个患者通常都有几个断开的电子或纸质病历,并具有复制或不完整的信息。此外,健康信息的终生积累可能对当前的看护人几乎没有价值,但可能侵犯了患者的隐私。12

The Personal Health Record (PHR) Model

个人健康记录代表了患者健康信息的另一种方法,将患者置于驾驶员座位上以管理健康信息。13(SeeTable 3。) The common operational method is that a patient chooses one of the many PHR products available.14These PHR products may differ by cost, interface, security, storage methods (Web-based, desktop-based, portable devices), and terms and conditions of service.15根据所选产品的细节,无论患者还是指定/授权的人进入或收集患者的健康信息。患者的健康保险计划或雇主也提供了一些产品。For example, a patient’s health insurance plan has knowledge of the patient’s medical activities from claims, which can significantly improve the workflow of managing patient health information.16 Thus, the PHR may be a way of coordinating (managing) a patient’s otherwise dispersed health records. Different products have different characteristics, but according to the Markle Foundation Connecting for Health, a PHR should have the following characteristics:

  1. Patient-controlled
  2. 包含病人的lifetime health information
  3. 包含来自所有医疗保健提供者的信息
  4. Accessible anytime and anywhere
  5. Private and secur
  6. Transparent (traceable access and editing)
  7. Interoperable17

Some of the characteristics are difficult to achieve. For example, characteristics 2, 3, and 7 are limited by the individual’s ability to track all the past health information and by the limited interoperability of current health information systems.18The fact that the patient controls his or her PHR can also be problematic. Tang et al. point out that “it is unlikely that a stand-alone PHR that depends solely on patient input can act as a trusted conduit for transmission of medical record data among clinician offices or health care institutions” and that “while patient-entered segments are desirable for some information and only patients can provide some types of health data, clinicians must also have access to their own past considerations and interpretations, as well as have reliable objective data, if they are to depend on records for clinical decision making. The reliability of patient-entered data depends on the nature of the information per se, the patient’s general and health literacy, and the specific motivations for recording the data.”19因此,PHR的作者身份是一个有限的元素,必须相应地解决。

ASTM Continuity of Care Record (CCR) Model

使用了许多EMR,EHR和CPR系统,并且许多医疗保健实体仍使用基于纸质的健康记录。需要一个标准,该标准可以精确定义应记录哪些信息以及如何运输信息,以便所有系统都可以在处理患者健康信息时互操作。ASTM CCR(请参阅Table 4) was developed to store the most relevant patient information electronically and make it available to all providers, systems, and patients that require this information.20 An important aspect of the ASTM CCR is that it is technology neutral.21It is an XML-based system; therefore, it is human- and machine-readable and can be displayed in variety of formats (html, Microsoft Word document, or PDF file).22Another important aspect is its validity: the CCR can be completed only by authorized healthcare personnel.23It is also important to understand that the CCR is not a clinical document but a collection of clinical documents to summarize information from one or many existing patient health information systems.24


根据综述的文章,很明显that terms obtained from the initial search fall into three categories:

  1. 由特定医疗保健实体(提供者,诊所,实践,医院等)拥有的临床医生控制的电子患者健康记录(CPR,EHR,EMR),提供有限的互操作性和外部访问权限,但可靠性很高,但有许多有用的可靠性和有用的功能。尽管它可能是全面的患者健康信息的来源,但有限的互操作性可能导致患者的医疗保健记录缺乏协调性。反过来,这导致了当前常见的情况,即患者有许多不协调的,分散的纸张和电子健康记录,缺乏​​可靠且最新的,其中包含与医疗保健提供者最相关的信息关心。
  2. A patient-controlled, patient-owned, and patient-managed Personal Health Record (PHR) can serve as the coordination vehicle among various sources (records) of patient health information. The patient can obtain his or her health information from various healthcare providers and continually update the PHR. However, patients may not be very diligent about updating the PHR or may use their own judgment about what should or should not be included in the PHR. Therefore, this makes the PHR model highly unreliable and its validity and value questionable.
  3. The ASTM Continuity of Care Record (CCR) is the depiction of patient health information at any given time. It is updated by a provider at the conclusion of a medical encounter. The standards clearly define what type of information should be included in a CCR instance. Some of the data are required; some are optional. The provider decides which of the optional data are relevant and should be included. The patient’s most recent CCR can be printed, faxed, transmitted electronically, or made available on the Internet. It appears to be the best model to make the patient’s most relevant health information available and trustworthy for any provider at any point of care.


There is no one single perfect model or approach cited in the reviewed literature that would handle all aspects of patient health information. It is worth mentioning that every healthcare institution manages a health record (mostly paper-based) for each of its patients. The electronic health record adds many dimensions to the management of patient health information within the healthcare institution. However, the limited multi-enterprise interoperability requires other methods of coordinating patient health information. This is when the other models come into play. When patients embark on the task of managing their own health information, they can use one of many Personal Health Record products available to facilitate this process. Unfortunately, the reliability and validity of the end product can cause it to be of limited value to a provider. The ASTM CCR takes care of this problem by placing the provider in charge of creating the patient’s health summary after every encounter and by clearly defining the content of the document. The versatility of how a CCR can be accessed and transported across different platforms and institutions makes it a valuable model for managing patient health information.

Kamila Smolij, MS, is an instructional designer at Sterling Bank in Houston, TX.

Kim Dunn, MD, PhD, is an assistant professor at the School of Health Information Sciences at the University of Texas.


1.总统乔治·W·布什(George W. Bush),国情咨文,2004年1月20日。
2. Simon P. Cohn, MD, MPH. National Committee on Vital and Health Statistics letter to The Honorable Michael O. Leavitt, Secretary, U.S. Department of Health and Human Services. September 2005. Available April 6, 2006).
4. “Consumer Awareness: Addressing Healthcare Connectivity as a Matter of Life and Death.” HealthIT: An Initiative of the U.S. Department of Health and Human Services. Available年4月18日访问)。
5. Varkony, P. “Katrina Revealed Need for Digital Health Records.”The Morning Call Online,2006年3月19日。年4月18日访问)。
6. Makaryus, A. N., and E. A. Friedman. “Patients’ Understanding of Their Treatment Plans and Diagnosis at Discharge.” Mayo Clinic Proceedings 80 (2005): 991–994.
7. Kibbe, D. C. “Unofficial FAQ of the ASTM Continuity of Care Record (CCR) Standard.” Available at July 18, 2006).
8. Dickinson, G., L. Fischetti, and S. Heard. “HL7 EHR System Functional Model Draft Standard for Trial Use.” July 2004. Available documenti / 0/100/140/148 EHR -SWhitePaper.pdf(accessed July 16, 2006).
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11. Waegemann, C. P. “EHR vs. CCR: What Is the Difference between the Electronic Health Record and the Continuity of Care Record?”医疗记录Institute。可用年4月18日访问)。
12. Ibid.
13. The Markle Foundation’s Connecting for Health in the Information Age Project: The Personal Health Working Group. “Final Report.” Available April 12, 2006).
14. Huang,X。“个人健康记录(PHR)保持。”IHealth:控制个人医疗保健。2004年 April 12, 2006).
15. Markle Foundation在信息时代项目中的健康连接:个人健康工作组。“总结报告。”
16. Korpman, R. A. “Getting Personal.” For the Record 16, no. 8 (2004): 17. Available April 12, 2006).
17. The Markle Foundation’s Connecting Healthcare in the Information Age Project: The Personal Health Working Group. “Final Report.”
19. Tang, P. C., J. S. Ash, D. W. Bates, J. M. Overhage, and D. Z. Sands. “Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption.” Journal of the American Medical Informatics Association 13 (2006): 121–126. First published online as doi:10.1197/jamia.M2025. Available April 14, 2006).
20.医疗记录Institute. “Continuity of Care Record: The Concept Paper of the CCR—Version 3.” Available April 14, 2006).
21. Waegemann, C. P. “EHR vs. CCR: What Is the Difference between the Electronic Health Record and the Continuity of Care Record?”
22.病历研究所。“护理记录的连续性:CCR的概念论文 - 转交3.”
23. Ibid.
24. Peters, R. M., D. C. Kibbe, T. Sullivan, C. Tessier, and A. Zuckerman. “A Rebuttal to Wes Rishel’s Gartner Report ‘Two Versions of Continuity of Care Record Offer Different Approaches to Interoperability’—and a Proposal for Rapid Progress on Interoperability.” Available April 10, 2006).

Article citation: Perspectives in Health Information Management 3;10, Winter 2006

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