Consumer Health Informatics: Electronic Health Record
Dr. Betty L. Chang , Editor-in-Charge of Research and International Issues
There is an unprecedented global interest in Electronic Health Records (EHR). Information technologies have increased consumers' access to health information and transformed the health care delivery paradigm. Health Insurance Portability and Accountability Act (HIPPA) (USDHHS, 2002) has given consumers increased rights and powers. Today's consumers have the right to access their own health records and obtain copies of these records; theoretically, they may amend and correct records and control access by third parties. Moreover, the EHR will enable patients and eligible health care providers to have health information at any time, anywhere.
Ideally, an EHR consists of a patient's complete record, combining information derived from patient contacts with health care providers with other health data such as laboratory reports, health outcomes, disease management programs and other data relevant to the consumer's or patient's health. Most significantly, it allows patients to exercise greater control over the data. The functionality of an EHR may vary, however, they generally include (Kim & Johnson, 2002)
Researchers, health care organizations and vendors are in the process of planning, developing and evaluating systems that will make well-functioning EHR systems widely available. In the United States, the National Health Information Infrastructure has been studying the information needs of consumers, health care professionals, and other health system stakeholders (Baur, Deering, & Hsu, 2001). Other countries such as the United Kingdom (NHS, 2002), Canada (National Electronic Health Records Taskforce, 2002), and Australia (Patton, 2003) among others are creating cross-organizational, and longitudinal electronic health records available to the individual consumer (patient) with updated information on an around the clock basis, seven days a week. These encounters would include hospitalizations, emergency room admissions, visits to clinics, health care providers' offices, reports from special services, referrals, and long-term and hospice care. One of the keys to such a system is the availability of a Universal Identifier, which is available in a number of foreign countries, but remains controversial in the United States.
Benefits of the EHR are expected to accrue to both consumers and health care professionals. Relevant information performed for a patient in different locations and by different specialties will be readily available, redundancies can be reduced or eliminated and selective parts of the record can be provided to relevant eligible persons. A key concept is that the patient is a participant in the flow of information while recognizing the rights and responsibilities of all stakeholders. Such a system is expected to result in better healthcare outcomes, satisfaction, adequacy of information for health care decisions and cost savings for health care facilities.
What are the challenges to the implementation and evaluation of the EHR? Issues of patient privacy, confidentiality, security of data and human factors in control and access to information arise immediately. The question of who shall control access and to what kind of data is important. Although patients ideally should have the right to give permission to various types of health care personnel for their access to the patient's record, some argue that patients may not always know what kinds of information a health care provider needs to make health care decisions. Who will be responsible for maintaining and updating the cumulative patient record and how will the record be stored? Security of information is a critical issue. In the U.S., the newly implemented HIPAA regulations address security and privacy issues; however, there are variations among states, and some unevenness in the way in which the regulations are implemented.
Future research is needed in a number of areas related to the EHR. Some examples are: What is the optimal level of participation for different consumers? To what extent do consumers feel more empowered by the EHR? How can aspects of heath information literacy be incorporated into the system? To what extent is security maintained? How is privacy and confidentiality safeguarded? It is critical that research be conducted to address these and other questions. With continued progress in the implementation of EHR, consumers will have greater participation and control over their own health care, and improved healthcare outcomes.
Baur C, Deering MJ, and Hsu L. ehealth: federal issues and approaches. In: Rice RE and Katz JE, editors. The Internet and Health Communications, Thousand Oaks, CA: Sage Publications; 2001, Chap. 16, 355-384.
Kim MI and Johnson KB. Personal health records: evaluation of functionality and utility. Journal of the America Medical Informatics Association 2002; (9) 171-180.
National Electronic Health Records Taskforce. Health Online ActionPlan 2 nd edition; 2002. http://www.health.gov.au/healthonline/ accesed 2003.
NHS Information Authority. Information for health -– an information strategy for the modern NHS; 2002. http://www.nhsia.nhs.uk/ Accessed Dec. 2002.
Patton MA. Research to impact national electronic health record agenda. DSTC Media Release; 2003. DSTC: http://www.dstc.edu.au . Accessed 2003.
USDHHS (U.S. Department of Health and Human Services). Standards for privacy of individually identifiable health information. Final rule, 45 CRF Parts 160 and 164, RIN 0991-AB14; 2002. http://www.hhs.gov/ocr/hipaa/privruletxt.txt. Accessed 12-1-02.