Nationwide Health Information Research Articles

Compelled disclosure of health information: Protecting against the greatest potential threat to privacy

The United States Department of Health and Human Services (HSS) has been charged with leading the effort to adopt interconnected electronic health records (EHRs) within 10 years, including the development of a Nationwide Health Information Network (NHIN). The NHIN will link health records maintained in hospitals, physicians’ offices, clinics, and other locations. The potentially easy access to large volumes of identifiable health information through interconnected EHRs raises serious concerns about privacy and confidentiality. Little or no attention has been given to mechanisms to prevent the disclosure of sensitive health information when third parties compel individuals to disclose their health information. Such disclosure may have adverse consequences, including the inability to obtain insurance or employment. In addition, individuals may experience embarrassment, humiliation, shame, anxiety, and depression if their health secrets are revealed. Privacy and confidentiality protections must be included in the architecture of the initial system design proposals of the NHIN. If not, it will be very difficult, and perhaps cost-prohibitive, to add privacy-enhancing features to the system in the future. Furthermore, without a mechanism to limit the scope of disclosures to third parties pursuant to an authorization, the creation of the NHIN has the potential to result in major loss of privacy and confidentiality.—Michael D. Wagoner

Standards for data collection and monitoring in a telemedicine research network

While a networked, nationwide health information system is financially and logistically impractical, the development of independent, regional systems is realistic and feasible. A Telemedicine Research Network (TRN) could connect a number of geographically disparate health systems. This would require the reconciliation of policies and practices in five principal areas: partner agreement on project scope; privacy, security and confidentiality; technical standards; telecommunications and computer infrastructure; change management and training. Initial establishment of a first-stage TRN would require very little technical development and would, instead, rely on trust among the partners. The development of standards-based TRNs will greatly increase the quality and quantity of telemedicine research.

The Check Bus Project and its Effectiveness on Health Promotion at Work

Employees of two large companies in Switzerland took part in a nationwide health information and promotion campaign at work, which included various physical examinations. A total of 5,849 consecutive participants were sent a questionnaire to determine whether changes had been made in their lifestyles and if they had benefited from participation; 2,361 (40.4%) responded. The campaign was rated highly at 8.3 on a scale from 1 to 10. Respondents reported benefiting most from the personal examination results, in particular the measurement of bone density, examination of the carotid arteries and discussions with the staff. Of the respondents, 921 stated they changed their lifestyle in the area of physical activity (64.4%) and nutrition (63.6%). Multiple logistic regression analysis showed the variables predictive of responding were age, hierarchy, diet and smoking. Health promotion at work and the choice of offered examinations may influence the effects of health care promotion at the workplace and the readiness of participants to improve their attitudes to health. Health promotion at work is highly regarded by employees who pay more attention to diet, smoke less and in particular those over 50 yr of age. High-tech equipment in a mobile unit may attract employers and employees may profit most from the individual examination results; 39% of the respondents stated they changed their lifestyle as a consequence of the Check Bus campaign.

District health information systems in the public sector: health centres in Korea

The public health sector in South Korea introduced district health information systems (DHIS) in health centres in the early 1990s. DHIS aimed to help health centres to provide comprehensive health care services and to achieve effective and efficient management of their works. District health information systems are still being implemented in health centres. Information generated and collected through the systems is to be used by local authorities to plan and manage health services in their areas, and further by the central government to make a health plan and health policy at the national level. However, the adoption and implementation of DHIS by health centres does not meet the initial anticipation. Moreover, reasons for that have not been explored yet. This paper presents the development of DHIS for health centres in Korea, evaluates the project focusing on impacts and problems found in implementing the systems, and provides lessons and recommendations for establishing a nationwide health information network.

National health information privacy: regulations under the Health Insurance Portability and Accountability Act.

Health information privacy is important in US society, but existing federal and state law does not offer adequate protection. The Department of Health and Human Services, under powers granted by the Health Insurance Portability and Accountability Act of 1996, recently issued a final rule providing systematic, nationwide health information privacy protection. The rule is extensive in its scope, applying to health plans, health care clearinghouses, and health care providers (hospitals, clinics, and health departments) who conduct financial transactions electronically ("covered entities"). The rule applies to personally identifiable information in any form, whether communicated electronically, on paper, or orally. The rule does not preempt state law that affords more stringent privacy protection; thus, the health care industry will have to comply with multiple layers of federal and state law. The rule affords patients rights to education about privacy safeguards, access to their medical records, and a process for correction of records. It also requires the patient's permission for disclosures of personal information. While privacy is an important value, it may conflict with public responsibilities to use data for social goods. The rule has special provisions for disclosure of health information for research, public health, law enforcement, and commercial marketing. The privacy debate will continue in Congress and within the president's administration. The primary focus will be on the costs and burdens on health care providers, the ability of health care professionals to use and share full medical information when treating patients, the provision of patient care in a timely and efficient manner, and parents' access to information about the health of their children.

Literature information and medical and health information service

It was only very recent that overall planning of a nation-wide medical and health information service system in Japan was started.At the beginning, the Ministry of Health and Welfare and the Ministry of International Trade and Industry were trying to develop their own plan separately. Although the improvement of regional medical and health services was the final goal for both of them, the former placed their emphasis on contents of information itself, while the latter concentrated their effort on developing a computerized system and machines which can be used in medical and health information services.In July 1974, a new non-profit organization, the Medical Information System Development Center, was established by these two ministries, aiming to achieve their mutual goal of developing information systems in medical and health fields. However, the information service network based on literature which should be a basic part of the overall medical and health information service has not been given due attention by both of the ministries' preliminary studies for the plan.The same negligence of literature, information in other many social activities is often observed. Social systems are getting to be more complexed than ever, and need of various information for decision making in daily activities is increasing. For such decision making, literature information may not be used at all. Thus, it is losing its share in whole information activities.Librarians are not fully aware of this change of outside world.They should pay more of their attention to such a fundamental question as what the role of literature in information activities of social systems, for instance, medical care, is, and what kind of information can be obtained from literature.Even though the share of literature in information activities is lessening, its annual product has been and is still increasing with an exponential rate. And the demand for particular information such as numerical data, whether it is from literature or not, is increasing along with the need for information through other media such as telephone, radio, television, video tapes, audio tapes, magnetic tapes, etc.The present situation of literature information activities in Japan is far from satisfactory.The Japan Medical Library Association, which has the best organized system for literature providing service through its inter library loan service network, does not have any official relationship with information centers such as the Japan Information Center of Science and Technolgy (JICST), the International Medical Information Center, Inc. (IMIC), the Japan Pharmaceutical Information Center (JAPIC), and the Medical Information System Development Center. And these information centers do not have a service network to link their activities yet.Unless the situation is improved without much delay, medical and health service in Japan will lack the basic system of upgrading its service's quality. And meanwhile medical librarians in this country will be a mere custodian of books again.

Emerging 21(st) Century Medical Technologies.

Although several medical technologies have been around since decades and are in the continuous process of development, some latest technologies are changing the way medicine would be practiced in the future. These technologies would allow medical practice from anywhere, any time and from any device. These include smart phones, Tablet PCs, Touch screens, digital ink, voice recognition, Electronic Health Records (EHRs), Health Information Exchange (HIE), Nationwide Health Information Network (NwHIN), Personal Health Records (PHRs), patient portals, Nanomedicine, genome-based personalized medicine, Geographical Positioning System (GPS), Radiofrequency Identification (RFID), Telemedicine, clinical decision support (CDS), mobile home healthcare, cloud computing, and social media, to name a few significant.