Biomedical and Health Informatics and Agency

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106 Biomedical and Health Informatics and agency. At its core, biological citizenship Biomedical and poses the question of how people should balance the necessity of having to rely on the technical Health Informatics expertise of others to lead their lives, against the possibility of exerting a hitherto unprecedented Biomedical and health informatics (BMHI) is level of autonomous biological agency made pos- the field that is concerned with the acquisition sible by the biotechnological changes of the last of data, information, and knowledge to improve few decades. On the one hand, the complexity of health, health care, public health, and research. knowledge and technology—biological, medical, BMHI is playing a growing role in health-related and otherwise—with which people interface daily fields. On the clinical side, it is increasingly rec- requires a reliance on specialized expertise; on the ognized for developing methods and tools to other hand, these same complexities make avail- improve the quality and safety while reducing the able to everyone new ways of learning about and cost of health care. For patients and consumers, controlling biological characteristics and their it is seen as providing empowerment to use data impact on people’s future. and information to improve health. BMHI also The relative newness of the biotechnologies makes contributions to research, especially in most closely linked to biological citizenship, areas such as genomics, in which basic biological coupled with their pace of growth and develop- findings are translated to improved diagnosis and ment and the lack of established social norms treatment of disease. and legislative regulations governing them, make biological citizenship an important concept to Basic Terminology of the Field understand, inquire, and use. Concepts related Before exploring the details of BMHI, the word to biological citizenship—Philip Frankenfeld, for informatics needs to be defined. This word has example, proposed a model for “technological been around for several decades and its usage is citizenship,” which defines belonging to a group not limited to biomedical and health disciplines. based on boundaries created by the usage of cer- But certainly in the United States, the most promi- tain specific technologies, or of technology gener- nent usage of it comes from the biomedical and ally—provide additional perspectives on the kinds health disciplines. William Hersh has defined of questions, problems, and situations related to informatics as the field concerned with optimal biological citizenship. use of information, often aided by the use of tech- nology, to improve individual health, health care, Zoltan P. Majdik public health, and biomedical research. North Dakota State University Informatics is more about information than technology, with the latter being a tool, albeit an See Also: Genetically Modified Organisms, Media important one, to enable better use of informa- Coverage of; Genetics; Risk Society; Scientific tion. The former School of Informatics at the State Complexity, Communication of. University of New York at Buffalo defined infor- matics as the Venn diagram showing the intersec- Further Readings tion of people, information, and technology. C. P. Petryna, Adriana. Life Exposed: Biological Citizens Friedman has defined a “fundamental theorem” After Chernobyl. Princeton, NJ: Princeton of informatics, which states that informatics is University Press, 2002. more about using technology to help people do Rabinow, Paul. Artificiality and Enlightenment: cognitive tasks better than about building sys- From Sociobiology to Biosociality. Princeton, NJ: tems to mimic or replace human expertise. He Princeton University Press, 1996. has also defined informatics as “cross-training,” Rose, Nikolas and Carlos Novas. “Biological bridging an application domain (such as public Citizenship.” In Global Assemblages: Technology, health or medicine) with basic information sci- Politics and Ethics as Anthropological Problems, ences. Friedman has also defined informatics by Aihwa Ong and Stephen J. Collier, eds. Oxford: what it is not, including analyzing large data Blackwell, 2005. sets, employment in circumscribed information Biomedical and Health Informatics 107 technology (IT) roles, or anything done using a which is often housed academically in engineer- computer. ing schools. However, IT professionals come from Within BMHI are myriad subdisciplines, all other backgrounds, including fields such as man- of which apply the same fundamental science agement information systems (MIS), whose pro- and methods, but are focused on particular sub- grams are usually in business schools. Within IT ject domains. Edward H. Shortliffe has proposed and computer science are a heterogeneous array that informatics proceeds along a continuum of people with varying skills, including develop- from the cellular and molecular (bioinformatics) ers, programmers, software engineers, informa- to the person (medical or clinical informatics) to tion architects, and support personnel. the population (public health informatics). The Another source of diverse terminology con- application of informatics is focused on specific cerns the health record of the individual. When health care disciplines such as nursing (nursing these records were first computerized, the term informatics), dentistry (dental informatics), and electronic medical record (EMR) was most com- pathology (pathology informatics), as well as monly used. However, this has mostly been sup- among consumers and patients (consumer health planted by the term electronic health record informatics) (see Figure 1). There are also disci- (EHR), which implies a broader and more longitu- plines in informatics that apply across the cell- dinal collection of information about the patient. person-population spectrum, as follows: There is increasing interest in the personal health record (PHR), which usually refers to the patient- • Imaging informatics: informatics with a controlled aspect of the health record, which may focus on imaging, including the use of or may not be tethered to one or more EHRs from picture archiving and communication health care delivery organizations. systems (PACS) to store and retrieve There has been a major investment in EHRs images in health care settings. in the United States since 2009, when the Health • Research informatics: the use of infor- Information Technology for Clinical and Eco- matics to facilitate biomedical and health nomic Health (HITECH) Act was included as research, including a focus on clinical part of the American Recovery and Reinvest- and translational research that aims to ment Act (ARRA, also known as the economic accelerate research findings into health care. Related Terminology of Informatics Imaging informatics Research informatics There are a number of other terms that are impor- tant for one to understand in the context of BMHI. {Clinical field} Consumer health The term health information management (HIM) informatics informatics is the discipline that has historically focused on the management of medical records. As medi- cal records have become electronic, this field has Bioinformatics Medical Public health been in transition and increasingly overlaps with (cellular and or clinical informatics molecular) informatics. One major difference between HIM informatics (population) and informatics is the educational path of practi- (person) tioners. HIM professionals have historically been educated at the associate or baccalaureate level, Biomedical whereas informaticians often come from clini- Legal Chemo‑ informatics and health informatics cal backgrounds, including those with doctoral informatics degrees such as M.D. or Pharm.D. Information technology (IT) is the term gener- Informatics = People + Information + Technology ally used to describe computers and related tech- nologies in operational settings. The academic Figure 1 An overview of biomedical and health informatics discipline that underlies IT is computer science, and its subdisciplines 108 Biomedical and Health Informatics stimulus bill). HITECH allocates up to $29 bil- for other applications such as quality assurance, lion in incentives for the adoption of EHRs by clinical research, and public health. physicians and other professionals as well as hos- Another broad set of terms important to BMHI pitals in the United States. The HITECH program are the “tele-” terms. The two most widely used is administered by the Office of National Coor- terms are “telemedicine,” which refers to the dinator for Health Information Technology, an delivery of health care when the participants are agency within the U.S. Department of Health and separated by time or distance, and “telehealth,” Human Services. which has more of a focus on direct interaction Related to EHR growth is interest in health with health on information and communication information exchange (HIE), which is the exchange technology (ICT). As with informatics, the “tele-” of health information for patient care across tradi- terms sometimes reflect medical specialties in tional business boundaries in health care and was which they are applied, for example, teleradiol- also funded through the HITECH Act. Even many ogy and telepathology. health care organizations that have exemplary A somewhat related term is e-Health, which is health IT systems have difficulty providing their sometimes defined as the application of ICT to patient information to other entities where the health and health care. A variant
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