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Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper.

Secondary use of health data applies personal health information (PHI) for uses outside of direct health care delivery. It includes such activities as analysis, research, quality and safety measurement, public health, payment, provider certification or accreditation, marketing, and other business applications, including strictly commercial activities. Secondary use of health data can enhance health care experiences for individuals, expand knowledge about disease and appropriate treatments, strengthen understanding about effectiveness and efficiency of health care systems, support public health and security goals, and aid businesses in meeting customers' needs. Yet, complex ethical, political, technical, and social issues surround the secondary use of health data. While not new, these issues play increasingly critical and complex roles given current public and private sector activities not only expanding health data volume, but also improving access to data. Lack of coherent policies and standard "good practices" for secondary use of health data impedes efforts to strengthen the U.S. health care system. The nation requires a framework for the secondary use of health data with a robust infrastructure of policies, standards, and best practices. Such a framework can guide and facilitate widespread collection, storage, aggregation, linkage, and transmission of health data. The framework will provide appropriate protections for legitimate secondary use.

Access to Information↗

Building the national health information infrastructure for personal health, health care services, public health, and research.

BACKGROUND: Improving health in our nation requires strengthening four major domains of the health care system: personal health management, health care delivery, public health, and health-related research. Many avoidable shortcomings in the health sector that result in poor quality are due to inaccessible data, information, and knowledge. A national health information infrastructure (NHII) offers the connectivity and knowledge management essential to correct these shortcomings. Better health and a better health system are within our reach. DISCUSSION: A national health information infrastructure for the United States should address the needs of personal health management, health care delivery, public health, and research. It should also address relevant global dimensions (e.g., standards for sharing data and knowledge across national boundaries). The public and private sectors will need to collaborate to build a robust national health information infrastructure, essentially a 'paperless' health care system, for the United States. The federal government should assume leadership for assuring a national health information infrastructure as recommended by the National Committee on Vital and Health Statistics and the President's Information Technology Advisory Committee. Progress is needed in the areas of funding, incentives, standards, and continued refinement of a privacy (i.e., confidentiality and security) framework to facilitate personal identification for health purposes. Particular attention should be paid to NHII leadership and change management challenges. SUMMARY: A national health information infrastructure is a necessary step for improved health in the U.S. It will require a concerted, collaborative effort by both public and private sectors.

Confidentiality↗

[ICPC-2--international classification of primary health care and its application in Croatian health care].

A consensus reached by the medical profession, Croatian Institute of Health Insurance, Croatian Institute of Public Health, and Ministry of Health constitutes a solution to the problem of a data standard required in building an information system for primary health care. This consists of accepting ICPC-2 as a data standard for our Family Medicine, Pediatrics and Women's Health. The classification structure of the International Classification of Primary Care allows, recommends and urges that special codes be established by individual states or local authorities when registering patients' reasons for seeking medical aid or medical procedures. Namely, it urges the authorities to set the codes for such reasons about which a state or local agreement or determination has been made. This is the first public presentation of the proposal Croatia's Additions to the International Classification of Primary Care. They are essential to its implementation in our health insurance, health statistics and medical informatics.

Ambulatory Care Information Systems↗

Industry and government perspective in influenza control.

We have had recent reminders of the threats posed by naturally occurring and bioengineered pandemic respiratory infections. It is estimated that if a pandemic infection were to arise anywhere in the world, such an infection would become widespread within 3 months and would have its maximum effect within 6 months. At present, the fastest that a vaccine effective against a new combination of antigens can be developed, purified, and produced is 9-12 months, not counting time for mass production. The current rate at which the production of influenza vaccines can be accelerated is limited by the fact that production is carried out in eggs. Therefore, there is urgent need for cell-based vaccine technologies. These are under way in several centers, yet attainment of a safe product remains several years away. Furthermore, there is need for public and private investment in manufacturing surge capacity and/or dedicated National Institutes of Health facilities to enable accelerated production. We must support efforts to shorten development time by developing and approving subunit antigens and immunogens that anticipate the most virulent viral mutations. Surveillance sites and their electronic interconnections must be expanded. Another component still lacking is funding for laboratories with high throughput screening and strong informatics capabilities to enable the fingerprinting and cataloguing of all known specimens of influenza and other pathogenic organisms for rapid identification of emerging or bioengineered pathogens. In all these efforts, we look to the federal government and to the biomedical research community in both public and private sectors.

Bioterrorism↗

New trends of postgraduate education in public health in Slovakia (the first experiences of the school of public health in Bratislava).

The School of Public Health (SPH) in Bratislava was established on 1 July 1991, as an organisational unit of the Post-graduate Medical School, directly subordinated to the Ministry of Health of the Slovak Republic. The SPH performs both postgraduate and continuing education of specialists in individual public health branches. It participates in the research activities within the field of public health. Our SPH is engaged in the network of European schools of public health, in association with the Association of Schools of Public Health in the European Region (ASPHER). In coordination with these schools, the SPH elaborates on a system of training Europe-wide a comparable qualification degree in Master of Public Health (MPH). In collaboration with the World Health Organization (WHO), the SPH also organizes training courses and seminars with international participation. The SPH entered into the school year 1992/93 with its 5 departments and sub-departments in the following organisational structure: 1. Department of Health Strategy with sub-departments: Health Legislation Health Education Health Sociology 2. Department of Medical Informatics 3. Department of Health Management 4. Department of Medical Education 5. Department of Preventive Medicine with sub-departments: Epidemiology Hygiene of Children and Adolescents Environmental Hygiene Nutrition Preventive Occupational Health Health Protection against Ionization

Education, Graduate↗

Developing Georgia's telemedicine network.

Passage of Georgia's Distance Learning and Telemedicine Act of 1992 resulted in a windfall of $50 million from telephone company over-earnings. Rather than refund the money to consumers, legislators created a fund to finance telecommunications projects in medicine and education. When Governor Zell Miller signed the Act into law more than a year ago, he said, "[It] will immediately catapult Georgia to the forefront of this nation in the use of advanced telecommunications to improve the quality of life of its people." The law also set the state's cable television and telephone companies at odds. Nancy Horne, executive director of the Cable Television Association of Georgia, said that her industry's broadband fiber and coaxial infrastructure is in place to provide the state with telemedicine capabilities, and that transmission of full motion video or high resolution diagnostic images could take hours over standard telephone lines. Representatives of telephone companies argue that new high-speed cell relay switching technology provides instantaneous communications. An appointed Board of Governors holds tightly to the strings that secure a purse containing the $50 million. No grants have yet been awarded. In the middle of the debate stands Georgia's Department of Administrative Services, which moderates the competition between the two industries. And, the Medical College of Georgia created a demonstration project based on telephone technology. Representatives of both institutions gave Healthcare Informatics their views on developments of telemedicine in Georgia.

Computer Communication Networks↗

Technological and medical advances: implications for health psychology.

Behavioral telehealth, health informatics, organ and tissue transplantation, and genetics are among the areas that have been affected by advances in technology and medicine. These areas illustrate the opportunities and the challenges that new developments can pose to health psychologists. Each area is discussed with respect to implications for practice, research, public policy, and education and training: recommendations are provided.

Behavioral Medicine↗

Health informatics: linking investment to value.

Informatics and information technology do not appear to be valued by the health industry to the degree that they are in other industries. The agenda for health informatics should be presented so that value to the health system is linked directly to required investment. The agenda should acknowledge the foundation provided by the current health system and the role of financial issues, system impediments, policy, and knowledge in effecting change. The desired outcomes should be compelling, such as improved public health, improved quality as perceived by consumers, and lower costs. Strategies to achieve these outcomes should derive from the differentia of health, opportunities to leverage other efforts, and lessons from successes inside and outside the health industry. Examples might include using logistics to improve quality, mass customization to adapt to individual values, and system thinking to change the game to one that can be won. The justification for the informatics infrastructure of a virtual health care data bank, a national health care knowledge base, and a personal clinical health record flows naturally from these strategies.

Academic Medical Centers↗

Recommendations of the International Medical Informatics Association (IMIA) on education in health and medical informatics.

The International Medical Informatics Association (IMIA) agreed on international recommendations in health informatics / medical informatics education. These should help to establish courses, course tracks or even complete programs in this field, to further develop existing educational activities in the various nations and to support international initiatives concerning education in health and medical informatics (HMI), particularly international activities in educating HMI specialists and the sharing of courseware. The IMIA recommendations centre on educational needs for health care professionals to acquire knowledge and skills in information processing and information and communication technology. The educational needs are described as a three-dimensional framework. The dimensions are: 1) professionals in health care (physicians, nurses, HMI professionals, ...), 2) type of specialisation in health and medical informatics (IT users, HMI specialists) and 3) stage of career progression (bachelor, master, ...). Learning outcomes are defined in terms of knowledge and practical skills for health care professionals in their role (a) as IT user and (b) as HMI specialist. Recommendations are given for courses/course tracks in HMI as part of educational programs in medicine, nursing, health care management, dentistry, pharmacy, public health, health record administration, and informatics/computer science as well as for dedicated programs in HMI (with bachelor, master or doctor degree). To support education in HMI, IMIA offers to award a certificate for high quality HMI education and supports information exchange on programs and courses in HMI through a WWW server of its Working Group on Health and Medical Informatics Education (http://www.imia.org/wg1).

Education, Continuing↗

Australian implementation of the American National Standard, health level seven.

In response to requests from our health informatics community, Standards Australia has formed a working group to define and implement an Australian version of the Health Level Seven standard for admission, discharge, and transfer of patients in public and private hospitals. Health Level Seven is the only comprehensive standard for interhospital messages that currently exists internationally. Adopting Health Level Seven nationally and implementing it in accordance with the Australian standard could reduce the cost and time needed to design and build interfaces for hospital computing systems.

Australia↗

Using informatics principles and tools to harness research evidence for patient care: evidence-based informatics.

With the huge worldwide investment in biomedical research during the past 50 years, there are many important advances in health care knowledge each year. Unfortunately, it commonly takes over 20 years for even the most important of these advances to be widely integrated into clinical practice. Many potentially remediable factors are responsible for this dilemma in research transfer, including defective continuing education for health professionals and patients; increasingly complex medical regimens; diminishing resources for health care; and inadequate evidence management. The principles and procedures of health informatics can help overcome some of these barriers to research transfer, particularly such evidence management tasks as retrieving, processing, summarizing, disseminating and applying evidence for clinical care. Evidence retrieval has been improved by better indexing and electronic search engines, by improved access from clinical and other settings, and by integration of evidence into clinical decision support systems. Evidence processing has been greatly accelerated by streamlined methods of critical appraisal of research and by centralization of these procedures for the development of current awareness publications and cumulative "best evidence" databases. The Cochrane Collaboration has revolutionized the summarization (systematic review) of evidence. The internet has provided access to patients, practitioners, and policy makers, alike. Direct-from-patient automated data collection promises to move the connection between evidence and practice to a higher level. In all of these innovations, health care practice is most likely to be enhanced by intertwining best evidence with best informatics techniques.

Databases as Topic↗

Enhancing medical and public health capabilities during times of crisis.

Terrorist attacks and other catastrophic events will create demands that severely challenge the capacity of the medical/public health system. To meet the surge, a cadre of professionals should be trained to operate around the nucleus of medical/public health officials. At New York University, an inter-institutional team is considering specific roles for and an approach to training dentists to enable these health care professionals to supplement medical/public surge needs based upon informatics systems that provide critical information.

Delivery of Health Care↗

Strategic uses of information technology in health care: a state-of-the-art survey.

The general perception that the use of information technology (IT) in health care is ten to fifteen years behind IT in other industrial sectors such as banking, manufacturing, and airline is rapidly changing. Health care providers, faced with an unprecedented era of competition and managed care, are now exploring the opportunities for using IT to improve the quality while simultaneously reducing the cost of health care. A revolution is taking place in the health care industry, with IT playing an increasingly important role in its delivery. In recent years, for example, the industry spent approximately $12 billion to $14 billion a year on IT. Further exponential growth is expected as the health care industry implements electronic medical records, upgrades hospital information systems, sets up intranets for sharing information among key stakeholders, and uses public networks, such as the Internet, for distributing health-related information and for providing remote diagnostics. Along with these drastic changes and the new approach to health care, the field of health/medical informatics and telematics has also experienced significant growth in the last few years. This article identifies and surveys the critical information technologies that are being adopted to provide strategic benefits to the various health care constituencies including hospitals and health maintenance organizations (HMOs).

Canada↗

Strategies for developing innovative programs in international medical education. A viewpoint from Africa.

Postgraduate medical education is an important factor in Africa's present emphasis on health care as a basis for socioeconomic development. Such education must be relevant to the realities of health problems in Africa. The priority of most African governments is training in traditional health care management and in fields related to community- and problem-based medicine. Presently, opportunities for such training exist in only seven centers throughout Africa. A model health care system, offered by most national governments, is described. This system, which includes district, provincial, and central levels of care, delivers over 80% of health services, and it is within such a system that nationals returning from postgraduate medical education abroad will function. Problems currently associated with these systems are the shortages of expertise in the areas of management, logistics, informatics, and resources mobilization, as well as the generally low literacy of the community. Africa also needs more teachers in the basic sciences, further development of biomedical research, courses in continuing education, particularly for field workers in isolated areas, short courses on investigative techniques, and goal-oriented research aimed at solving public health problems in the student's country.

Africa↗

[Facing new ethical challenges and dilemmas].

Considering the present health policy, health service and health care systems, health condition and health demands of the people, proclaimed priorities in biomedical scientific research in the Republic of Croatia, and expected health and disease status in the first decades of the 21st century, the author raises the question of sensitization of the Croatian physicians and the public to new ethical challenges. These questions are arousing attention in the world and Europe as one of the peculiarities mankind is facing in the midst of new scientific, technical and informatic possibilities, at the same time in the context of global impoverishment and restricted public funds, with existing or expected changes in the demographic structure and the life philosophy system of values. In democratic, pluralistic societies, the dimension of human rights is getting increasingly pronounced. This is reflected in the postulation of international, national or professional bioethical standards related to biomedical research, in the emphasis on the indisputable public right to actively make decisions by consensus mechanisms about goals, priorities and limits of individual and collective health care programmes, forms and levels of medical care in the national health service and obligatory health insurance system, as well as about ethical aspects of the relation doctor-patient, at the boundary of the interactions of doctor-patient-profession-individual-community-society relationships.

Croatia↗

Integrating medical informatics into the medical undergraduate curriculum.

The advent of healthcare reform and the rapid application of new technologies have resulted in a paradigm shift in medical practice. Integrating medical Informatics into the full spectrum of medical education is a viral step toward implementing this new instructional model, a step required for the understanding and practice of modern medicine. We have developed an informatics curriculum, a new educational paradigm, and an intranet-based teaching module which are designed to enhance adult-learning principles, life-long self education, and evidence-based critical thinking. Thirty two, fourth year medical students have participated in a one month, full time, independent study focused on but not limited to four topics: mastering the windows-based environment, understanding hospital based information management systems, developing competence in using the internet/intranet and world wide web/HTML, and experiencing distance communication and TeleVideo networks. Each student has completed a clinically relevant independent study project utilizing technology mastered during the course. This initial curriculum offering was developed in conjunction with faculty from the College of Medicine, College of Engineering, College of Education, College of Business, College of Public Health. Florida Center of Instructional Technology, James A. Haley Veterans Hospital, Moffitt Cancer Center, Tampa General Hospital, GTE, Westshore Walk-in Clinic (paperless office), and the Florida Engineering Education Delivery System. Our second step toward the distributive integration process was the introduction of Medical Informatics to first, second and third year medical students. To date, these efforts have focused on undergraduate medical education. Our next step is to offer workshops in Informatics to college of medicine faculty, to residents in post graduate training programs (GME), and ultimately as a method of distance learning in continuing medical education (CME).

Computer Communication Networks↗