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Health data can be used to benefit individuals, public health, and medical research and development. [14] The uses of health data are classified as either primary or secondary. Primary use is when health data is used to deliver health care to the individual from whom it was collected. [15]
Disease or patient registries are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in post marketing surveillance of pharmaceuticals. [1] Registries are different from indexes in that they contain more extensive data.
Secondary data refers to data that is collected by someone other than the primary user. [1] Common sources of secondary data for social science include censuses , information collected by government departments, organizational records and data that was originally collected for other research purposes. [ 2 ]
In addition, they may apply the science of informatics to the collection, storage, analysis, use, and transmission of information to meet legal, professional, ethical and administrative records-keeping requirements of health care delivery. [1] They work with clinical, epidemiological, demographic, financial, reference, and coded healthcare data.
The standards allow for easier 'interoperability' of healthcare data as it is shared and processed uniformly and consistently by the different systems. This allows clinical and non-clinical data to be shared more easily, theoretically improving patient care and health system performance. [1]
These databases enable research on health and policy issues at the national, State, and local levels, including cost and quality of health services, medical practice patterns, access to healthcare, and outcomes of treatments. AHRQ has also developed a set of software tools to be used when evaluating hospital data.
The health information systems literature has seen the EHR as a container holding information about the patient, and a tool for aggregating clinical data for secondary uses (billing, audit, etc.). However, other research traditions see the EHR as a contextualised artifact within a socio-technical system.
The Union finds privacy as a fundamental human right, it wants to prevent unconsented and secondary uses of data by private or public health facilities. By streamlining access to personal data for health research and findings, they are able to instate the right and importance of patient privacy. [143]