Toward a National Health Information Infrastructure. Interim Report. Personal Health Dimension

06/20/2000

Core Elements of the Personal Health Dimension

 

A. Personal Health Record

  • Patient identification information
  • Emergency contact information
  • Lifetime health history: summary of care giver records from all sources of care, including immunizations, allergies, family history, occupational history, environmental exposures, social history, medical history, treatments, procedures, medication history, outcomes
  • Lab results, e.g., EKG's; or links to results, e.g., MRI results at a radiology dept data warehouse, digital images of biopsy slides, or digital video of coronary angiography
  • Emergency care information, e.g., allergies, current medications, medical/surgical history summary
  • Provider identification and contact information
  • Treatment plans and instructions
  • Health risk factor profile, recommended clinical preventive services, and results of those services
  • Health insurance coverage information

B. Other Elements

  • Correspondence: records of patient-provider communication, edits made to PHR, or concerns about accuracy of information in Health Care Provider Medical Records
  • Instructions about access by other persons and institutions
  • Audit log of individuals/institutions who access electronic records
  • Self-care trackers: nutrition, physical activity, medications and dosage schedules
  • Personal library of quality health information resources
  • Health care proxies, living wills and durable power of attorney for health care

C. Elements from the Community Health Dimension

  • Local public health contact information
  • Local health care services (e.g. walk-in clinics)
  • Environmental measures and alerts pertinent to an individual's home, neighborhood, school and workplace

Where Will Personal Health Information be Stored?

There is no single place in the NHII where all content will reside. Although the personal health record component could be stored in one repository - a smart card, the home computer, a third party information guardian service, or a health plan/provider server - the value of the NHII will lie in streamlining the organization of and access to content held in multiple places so that the right information is available for the right person at the right time and the right place. Ultimately, the individual will decide which information will be "captured" and kept under his or her control, which information shared with others, and which information will located and its site URL added to a list of favorites for easy access when needed.

Who Uses Personal Health Information in the NHII ?

Only those persons or organizations authorized by an individual will be able to access or utilize that individual's personal health information. The individual and his or her legal guardian or authorized family members will be the primary users. The individual will authorize his or her health care provider to access specific information in the personal health record component. Individuals could pre-approve certain information in the personal health record to be made accessible through secure technology to emergency services personnel in the case of patient incapacitation, such as unconsciousness. Individuals could also decide to participate in public health surveys by approving the transfer of specific personal health information for community health analyses with protection for security and confidentiality guaranteed.

Privacy, Security and Confidentiality Issues

The strictest attention will have to be paid to protecting the physical security and confidentiality of the personal information contained in and derived from the NHII. Individuals will designate the providers and others they authorize to access specific components of their personal health record. Individuals would be able to designate varying levels of privacy for information contained within their PHD depending upon its sensitivity. Individuals would be able to establish access logs and then be automatically notified, perhaps via e-mail, of all authorized and unauthorized "visits." Individuals could make provisions for the use of non-identifiable personal information for public health assessment. Individuals could also verify whether their personal health information maintained by health care providers, community agencies, and other entities is accurate, complete, and up to date and make corrections as needed.

Conclusion

Advances in the Personal Health Dimension of the NHII will allow individuals to make health care and wellness choices that are better informed and more beneficial for their health. Technologies currently exist that can implement this vision of the PHD. However, to fully realize this vision, a supporting structure of national health care data standards, data security and privacy legislation will need to be in place. Standards for personal health records need to be developed. User-friendly interfaces and cross-platform search engines are needed to permit the integration of information from multiple sources. Mechanisms to promote the quality of online health information resources, especially decision-support tools, need to be developed and implemented. The health care system and individual providers will need to adopt attitudes and practices that encourage patient participation in care decisions, and individuals will have to accept more personal responsibility for their own health.

The Health Care Provider Dimension

The Health Care Provider Dimension (HCPD) encompasses information to enhance the quality and efficiency of health services for each individual. The HCPD includes information captured during the patient care process and concurrently integrates this information with clinical guidelines, protocols and selected information that the provider is authorized to access from the personal health record, along with information from the Community Health Dimension that is relevant to the patient's care. The HCPD centers on the individual's health care patterns. The information is typically encounter-oriented and protected by mechanisms to ensure the confidentiality of each individual's health care information. The HCPD would be relevant in physicians' offices; hospitals; ambulatory care, long term care, and mental health facilities; and home care sites to facilitate continuity of care.

What are the Health Care Provider Benefits of the NHII?

The NHII will help improve the quality of patient care services by providing access to more complete and accurate patient data on-the-spot, around-the-clock. Clinical decision-making will be enhanced by the concurrent availability of medication or care path alternatives, along with warnings, alerts, reminders and information from other dimensions pertinent to diagnosis and treatment over a lifetime of patient care. Automated systems will help reduce adverse drug events by generating concurrent alerts and will facilitate recognition of these and other adverse medical events as they occur. Through the sharing of more complete and accurate information and the use of the most current clinical care plans, improvements in coordination of care among providers, across care settings, and in disease management will occur.

The existence of a HCPD will enhance both quality and efficiency in the health care system by supporting more timely and improved decisions, capturing complete and accurate information for clinical purposes, facilitating the use of derivatives of this information for reimbursement, research, and administrative purposes, and providing better data to track provider performance in terms of quality, cost, and outcomes. These benefits will help contain or reduce costs while enhancing the effectiveness of services. Clinical and population researchers, public health services and health care payors will obtain better and more accurate data from the provider dimension to improve the assessment of best practices, identify risk factors, and evaluate medical performance.

The data shared by health care providers will augment the Community Health Dimension by providing more accurate clinical data to support better patient outcomes analysis, improved services, and more detailed data for population-based and public health research. The data will augment the Personal Health Dimension by providing more consistent and complete documentation of individual encounters of care and medical events that can be summarized for inclusion or reference in the personal health record.

What are the Health Care Provider Functions of the NHII?

The functions include the capture, storage, communication, processing and presentation of information.

Information Capture

The NHII will use state of the art technologies to capture information from all patient encounters in ambulatory, in-patient, long-term care, and home/community settings. Increasingly, information will be captured closer to the point of care. The process must be easy to learn and use so that it becomes a natural part of the health care process. The information should be captured initially for clinical purposes, with derivative use of the data for reimbursement, research, and administrative purposes, and, with appropriate measures described later in the Health Care Provider section, for personal and community health management. Standards for data elements will ensure consistency, compatibility, and communication among providers and across technologies.

Information Storage

The primary record of care will be stored within the operational control of the provider who captures the original health care information. The primary record of care must be stored in a manner that will protect the completeness of the record and the integrity and confidentiality of the data. It must be part of an information system that is capable of providing authorized access seven days per week, 24 hours a day. If health care information is sent some place other than the point of care, the recipient of the information is responsible for protecting the confidentiality of the data.

Information Communication

Members of a health care team and other authorized health professionals will have access to an individual's specific and pertinent health care information. The health care information associated with a specific patient may also be communicated to payors, clinical researchers, and public health entities with appropriate permissions from the patient and appropriate legal protections for privacy, confidentiality, and security. The patient will have access to all health care information in the provider's medical records. With the patient's permission, specific information from patient visits will be placed in the patient's personal health record, which is part of the Personal Health Dimension. All communication of health care information will comply with national standards for data security including encryption and electronic signatures. These communication capabilities are essential to facilitate coordination of care.

Information Processing

The NHII will encompass electronic information systems that can synthesize clinical and other information and generate alerts, warnings, reminders, or clinical guidelines to the provider during the process of patient care.

Information Presentation

Standardization of data elements and formats will enhance the usefulness and exchange of information among different providers. Within these formats, providers will organize the presentation of the information in a manner that facilitates effective and efficient use of the information to provide care. Information must be presented when a provider needs it, in the most relevant medium (voice, text, or image), in the most useful and accessible manner, and at the most convenient location (usually at or near the point of care).

What Will the Health Care Provider Dimension Contain?

The NHII will contain a basic core of information in individual patient records to facilitate the flow of information across the continuum of care for the individual. Although the content of the patient record will vary by site of care and nature of the patient's disease, injury, or health status, standardized terms will be used to permit consistency. The patient record will include health care information covering one or more encounters for an individual. Content of the Health Care Provider Dimension will also come from several other sources. Some patient information will come from the personal health record with authorization from the patient, or directly from the patient, family caregiver, or legal guardian. Other information will come from providers, laboratory or radiology information systems. Additionally, the health care provider dimension will also include appropriate community health information, necessary for full understanding of a patient's health concerns.