A national agenda for public health informatics.

The American Medical Informatics Association 2001 Spring Congress brought together the public health and informatics communities to develop a national agenda for public health informatics. Discussions on funding and governance; architecture and infrastructure; standards and vocabulary; research, evaluation, and best practices; privacy, confidentiality, and security; and training and workforce resulted in 74 recommendations with two key themes: (1) all stakeholders need to be engaged in coordinated activities related to public health information architecture, standards, confidentiality, best practices, and research and (2) informatics training is needed throughout the public health workforce. Implementation of this consensus agenda will help promote progress in the application of information technology to improve public health.     

Current medicolegal and confidentiality issues in large, multicenter research programs

The convenience of fast computers and the Internet have encouraged large collaborative research efforts by allowing transfers of data from multiple sites to a single data repository; however, standards for managing data security are needed to protect the confidentiality of participants. Through Dartmouth Medical School, in 1996-1998, the authors conducted a medicolegal analysis of federal laws, state statutes, and institutional policies in eight states and three different types of health care settings, which are part of a breast cancer surveillance consortium contributing data electronically to a centralized data repository. They learned that a variety of state and federal laws are available to protect confidentiality of professional and lay research participants. The strongest protection available is the Federal Certificate of Confidentiality, which supersedes state statutory protection, has been tested in court, and extends protection from forced disclosure (in litigation) to health care providers as well as patients. This paper describes the careful planning necessary to ensure adequate legal protection and data security, which must include a comprehensive understanding of state and federal protections applicable to medical research. Researchers must also develop rules or guidelines to ensure appropriate collection, use, and sharing of data. Finally, systems for the storage of both paper and electronic records must be as secure as possible.     

Privacy, confidentiality, and security in information systems of state health agencies

OBJECTIVES: To assess the employment and status of privacy, confidentiality, security and fair information practices in electronic information systems of U.S. state health agencies. METHODS: A survey instrument was developed and administered to key contacts within the state health agencies of each of the 50 U.S. states, Puerto Rico and the District of Columbia. RESULTS: About a third of U.S. state health agencies have no written policies in place regarding privacy and confidentiality in electronic information systems. The doctrines of fair information practice often seemed to be ignored. One quarter of the agencies reported at least one security breach during the past two years, and 16% experienced a privacy and confidentiality related transgression. Most of the breaches were committed by personnel from within the agencies. CONCLUSIONS: These results raise questions about the integrity of existing privacy, confidentiality and security measures in the information systems of U.S. state health agencies. Recommendations include the development and vigorous enforcement of written privacy and confidentiality policies, increased personnel training, and expanded implementation of security measures such as encryption and system firewalls. A discussion of the current status of U.S. privacy, confidentiality and security issues is offered.     

Security aspects of electronic data interchange between a state health department and a hospital emergency department.

Electronic emergency department reporting provides the potential for enhancing local and state surveillance capabilities for a wide variety of syndromes and reportable conditions. The task of protecting data confidentiality and integrity while developing electronic data interchange between a hospital emergency department and a state public health department proved more complex than expected. This case study reports on the significant challenges that had to be resolved to accomplish this goal; these included application restrictions and incompatibilities, technical malfunctions, changing standards, and insufficient dedicated resources. One of the key administrative challenges was that of coordinating project security with enterprise security. The original project has evolved into an ongoing pilot, with the health department currently receiving secure data from the emergency department at four-hour intervals. Currently, planning is underway to add more emergency departments to the project.     

Need for standards in medical communication

Recent progress in clinical informatics resulted in two new tools: a comprehensive medical nomenclature and a prototype medical text processor. The direction of further progress is apparent. The technology is ready for large-scale computerization of health care documentation. The new progress-limiting factors seem to be related to the reorientation of the record writers and the entire health care industry. The true challenge of the 1990s is to make clinical data readily available, without jeopardizing the cherished values of medical data confidentiality and provider privacy.     

A Repository of Codes of Ethics and Technical Standards in Health Informatics

We present a searchable repository of codes of ethics and standards in health informatics. It is built using state-of-the-art search algorithms and technologies. The repository will be potentially beneficial for public health practitioners, researchers, and software developers in finding and comparing ethics topics of interest. Public health clinics, clinicians, and researchers can use the repository platform as a one-stop reference for various ethics codes and standards. In addition, the repository interface is built for easy navigation, fast search, and side-by-side comparative reading of documents. Our selection criteria for codes and standards are two-fold; firstly, to maintain intellectual property rights, we index only codes and standards freely available on the internet. Secondly, major international, regional, and national health informatics bodies across the globe are surveyed with the aim of understanding the landscape in this domain. We also look at prevalent technical standards in health informatics from major bodies such as the International Standards Organization (ISO) and the U. S. Food and Drug Administration (FDA). Our repository contains codes of ethics from the International Medical Informatics Association (IMIA), the iHealth Coalition (iHC), the American Health Information Management Association (AHIMA), the Australasian College of Health Informatics (ACHI), the British Computer Society (BCS), and the UK Council for Health Informatics Professions (UKCHIP), with room for adding more in the future. Our major contribution is enhancing the findability of codes and standards related to health informatics ethics by compilation and unified access through the health informatics ethics repository.     

Health data security: a new priority

As more health care information is computerized, concerns about the security of on-line data are growing. Some well-publicized health data security breaches illustrate the potentially devastating impact of confidentiality violations. This package of stories offers and in-depth look at the state of health data security. It includes a "roundtable discussion" by five prominent chief security officers, as well as articles on data encryption, biometrics, legislation and other topics.     

The use of routinely collected computer data for research in primary care: opportunities and challenges

INTRODUCTION: Routinely collected primary care data has underpinned research that has helped define primary care as a specialty. In the early years of the discipline, data were collected manually, but digital data collection now makes large volumes of data readily available. Primary care informatics is emerging as an academic discipline for the scientific study of how to harness these data. This paper reviews how data are stored in primary care computer systems; current use of large primary care research databases; and, the opportunities and challenges for using routinely collected primary care data in research. OPPORTUNITIES: (1) Growing volumes of routinely recorded data. (2) Improving data quality. (3) Technological progress enabling large datasets to be processed. (4) The potential to link clinical data in family practice with other data including genetic databases. (5) An established body of know-how within the international health informatics community. CHALLENGES: (1) Research methods for working with large primary care datasets are limited. (2) How to infer meaning from data. (3) Pace of change in medicine and technology. (4) Integrating systems where there is often no reliable unique identifier and between health (person-based records) and social care (care-based records-e.g. child protection). (5) Achieving appropriate levels of information security, confidentiality, and privacy. CONCLUSION: Routinely collected primary care computer data, aggregated into large databases, is used for audit, quality improvement, health service planning, epidemiological study and research. However, gaps exist in the literature about how to find relevant data, select appropriate research methods and ensure that the correct inferences are drawn.     

Position of the Academy of Nutrition and Dietetics: Nutrition Informatics

It is the position of the Academy of Nutrition and Dietetics that nutrition informatics is a rapidly evolving area of practice for registered dietitian nutritionists and nutrition and dietetic technicians, registered; and that the knowledge and skills inherent to nutrition informatics permeate all areas of the dietetics profession. Further, nutrition and dietetics practitioners must continually learn and update their informatics knowledge and skills to remain at the forefront of nutrition practice. Nutrition informatics is the intersection of information, nutrition, and technology. However, informatics is not just using technology to do work. The essence of nutrition informatics is to manage nutrition data in combination with standards, processes, and technology to improve knowledge and practice that ultimately lead to improved quality of health care and work efficiency. Registered dietitian nutritionists and nutrition and dietetic technicians, registered, are already experts in using evidence to practice in all areas of nutrition and dietetics. To remain at the forefront of technological innovation, the profession must actively participate in the development of standards, processes, and technologies for providing nutrition care.     

Issues and opportunities in public health informatics: a panel discussion.

A panel was convened at the American Medical Informatics Association Spring Congress to discuss issues and opportunities that arise when informatics methods, theories, and applications are applied to public health functions. Panelists provided examples of applications that connect efforts between public health and clinical care, emphasizing the need for integration of clinical data with public health data and the analysis of those data to support surveillance and informed decision making. Benefits to be gained by both medical informatics and public health at the interface were evident; both encounter the same major issues including privacy, systems integration, standards, and many more.     

Competencies for graduate curricula in health, medical and biomedical informatics: a framework

The rapid emergence of programmes in health informatics, medical informatics and biomedical informatics implies a need for core curricula in these diverse disciplines. This study investigated the recommended competencies for health and medical informatics, aiming to develop a framework for use in curricular development. Current health and medical programmes around the world were analysed to assess how these competencies are reflected in current curricula and to identify new competencies. Several preferred skills and knowledge sets were identified and 40 programs were analysed. Diverse curricular designs were found in these programmes. Competencies such as research skills, knowledge in health information systems and methods for informatics/computer science were the most frequently taught. Knowledge or skills in interpersonal communications, social impact of IT on health, and data mining may represent important skills for future informaticians. The suggested framework and the data analysed may be important for developing a competency-based modular curriculum.     

Patient confidentiality in the research use of clinical medical databases

Electronic medical record keeping has led to increased interest in analyzing historical patient data to improve care delivery. Such research use of patient data, however, raises concerns about confidentiality and institutional liability. Institutional review boards must balance patient data security with a researcher's ability to explore potentially important clinical relationships. We considered the issues involved when patient records from health care institutions are used in medical research. We also explored current regulations on patient confidentiality, the need for identifying information in research, and the effectiveness of deidentification and data security. We will present an algorithm for researchers to use to think about the data security needs of their research, and we will introduce a vocabulary for documenting these techniques in proposals and publications.     

Confidentiality and freedom of information for epidemiological data in governmental research

The issues of confidentiality and freedom of information are discussed for studies involving health surveillance around point sources of pollution. The problems discussed are related to protecting data after a study has been initiated. Research studies describing the impact of confidentiality on response rates are discussed. The U.S. Environmental Protection Agency's current and proposed procedures for handling and releasing these data are presented. These can be used by other agencies in defining their security procedures     

Transforming the public health information infrastructure

The public health information infrastructure is undergoing a transformation that is enabled by changes in health care informatics. The implementation of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, the patient medical record information standards, and National Health Information Infrastructure (NHII) recommendations by the National Committee on Vital and Health Statistics provide the basis for improved data reporting to public health agencies. The U.S. Department of Health and Human Services should provide leadership and resources for this transformation. Newly available federal resources will have the greatest effect on improving the information infrastructure if there is a strong commitment to developing and implementing public health data standards that build upon the National Electronic Disease Surveillance System.     

医学信息学的现状与未来

医学信息学是研究生物医学信息、数据和知识的存储、检索并有效利用,以便在卫生管理、临床控制和知识分析过程中作出决策和解决问题的科学。它是信息技术学与医疗卫生科学的交叉学科,前者是其方法学,后者是其应用领域。该文通过对医学信息学历史的透视、当前状况和未来面临挑战的分析,探讨了我国医学信息学发展的战略。要使中国的医学信息学的发展尽快与国际接轨,适应现代社会发展的需要,必须加快培养一支医学信息学专业的人才队伍,加强国际和国内合作交流,重点开展一些医学信息学基础的理论和应用研究,建立和完善一系列的相关标准和规范。     

EpiQMS: an Internet application for access to public health data for citizens, providers, and public health investigators.

Access to epidemiologic data is critical to public health practice. Unfortunately, most published data are out of date and live databases are inaccessible because of issues of confidentiality, varying user needs, cost, security concerns, and other reasons. EpiQMS is a Web-based application that allows exploratory, statistical, and geographic analysis of public health data. Tables, graphs, and maps with adjustments for small areas are available at three levels: (1) the general public, (2) public health and medical practitioners, and (3) epidemiologists and health officers. The difference in each level is with respect to the presentation of small cell sizes and small geographies as set by the data set custodians.     

Musings on privacy issues in health research involving disaggregate geographic data about individuals

This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic) of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association) workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals), including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.     

Data field standards and the Health Insurance Portability and Accountability Act

The Administrative Simplification Title of the Health Insurance Portability and Accountability Act of 1996 addresses the creation and adoption of nationwide standards for the electronic exchange and confidentiality protection of all individually identified data used in health care administration. The U.S. Department of Health and Human Services (DHHS) is implementing standards under this law. In addition to new standards, the law mandates that the Congress pass a health information privacy bill by August 1999 or that the DHHS adopt privacy protections for health information by February 2000. Published in 2001 by John Wiley & Sons, Ltd.     

Conducting Safety Research Safely: A Policy-Based Approach for Conducting Research with Peer Review Protected Material

A multidisciplinary team developed a policy-based approach that provides guidance for using peer review protected information for safety research while maintaining peer review privilege. The approach includes project approval by an ad hoc review committee, signed confidentiality agreements by investigators and study staff, early removal of case identification numbers, standards for maintaining data security, and publication of aggregate data without data set sharing. By describing this procedure and embedding into an institutional policy on Data for Performance Improvement, the team encourages other institutions to develop similar policies consistent with their state regulations.     

Framework for securing personal health data in clinical decision support systems

If appropriate security mechanisms aren't in place, individuals and groups can get unauthorized access to personal health data residing in clinical decision support systems (CDSS). These concerns are well founded; there has been a dramatic increase in reports of security incidents. The paper provides a framework for securing personal health data in CDSS. The framework breaks down CDSS into data gathering, data management and data delivery functions. It then provides the vulnerabilities that can occur in clinical decision support activities and the measures that need to be taken to protect the data. The framework is applied to protect the confidentiality, integrity and availability of personal health data in a decision support system. Using the framework, project managers and architects can assess the potential risk of unauthorized data access in their decision support system. Moreover they can design systems and procedures to effectively secure personal health data.