ABSTRACT
Privacy includes the right of individuals and organisations to determine for themselves when, how and to what extent information about them is communicated to others. The growing need of managing large amounts of both clinical and genetic data raises important legal and ethical challenges. This paper introduces some of the privacy-protection problems related to classical and genomic medicine, and highlights the relevance of trusted third parties and of privacy-enhancing techniques (PETs) in the context of data collection, e.g., for research. Practical approaches based on two pseudonymisation models, for both batch data collection and interactive data storage, are presented. The actual application of the described techniques today proves the possible benefits for medicine that innovative privacy-enhancing techniques can provide. Technical PET solutions can unlock valuable data sources, otherwise not available.
Subject(s)
Confidentiality , Genetic Testing/ethics , Genome, Human , Belgium , Humans , Information Storage and RetrievalABSTRACT
Time is the most important variable in healthcare, and standards are needed about how to represent information with explicit references to time. In this paper, the European Prestandard 'TSMI: time standards for healthcare specific problems' (CEN/TC251 preENV 12381) is presented which aims to be the first contribution to this harmonisation process, focusing on 'representation' and 'explicit reference' of temporal information in healthcare. The prestandard is mainly composed of two parts. First, the basic building blocks for modelling time-related information are introduced, and a formal representation scheme proposed. In a second part, conformance rules and principles for Healthcare Data and Information as well as for Healthcare Information Systems, are covered.
Subject(s)
Information Systems/standards , Telemedicine/standards , Artificial Intelligence , Diagnosis, Computer-Assisted/standards , Medical Records Systems, Computerized/standards , Point-of-Care Systems/standards , Semantics , Therapy, Computer-Assisted/standards , Time FactorsABSTRACT
Many laboratories use electronic message standards to transmit results to their clients. If all laboratories used the same "universal" set of test identifiers, electronic transmission of results would be greatly simplified. The Logical Observation Identifier Names and Codes (LOINC) database aims to be such a code system, covering at least 98% of the average laboratory's tests. The LOINC database should be of interest to hospitals, clinical laboratories, doctors' offices, state health departments, governmental healthcare providers, third-party payors, organizations involved in clinical trials, and quality assurance and utilization reviewers. The fifth release of the LOINC database, containing codes, names, and synonyms for approximately 6300 test observations, is now available on the Internet for public use. Here we describe the LOINC database, the methods used to produce it, and how it may be obtained.
